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Stem-Cell Therapy for Retinitis Pigmentosa Safe Thus Far in Early Human Study

Dr. Klassen in his labAn emerging stem-cell-derived treatment designed to preserve and potentially restore vision in people with retinitis pigmentosa (RP) has demonstrated a favorable safety profile in an ongoing Phase I/II clinical trial at the University of California, Irvine. The therapy is being developed by the regenerative medicine company jCyte with trial funding from the California Institute for Regenerative Medicine. Earlier research funded by the Foundation Fighting Blindness helped advance this therapeutic approach toward a human study.

Given this trial is one of the first-ever for a stem-cell-derived therapy for RP, this safety report is good news and an important step in the right direction. We at the Foundation look forward to additional reports from this study in the coming years as the trial advances.

The therapy involves the injection of retinal progenitors — stem cells that are in the process of becoming retinal cells — into the vitreous, the gel-like substance in the middle of the eye. Researchers believe the cells will release proteins that will keep the patient’s existing photoreceptors healthy, preventing their degeneration and preserving vision. Investigators also believe the proteins might rescue cones that have stopped processing light, but haven’t fully degenerated. Cones are the photoreceptors that provide the ability to read, recognize faces, and see in lighted conditions.

The company reported interim safety results for the first nine trial participants, the first of which was treated one year ago. All nine participants have had at least six months follow up. The trial has successfully gone through four reviews from a Data Safety Monitoring Board, a group of independent experts who monitor clinical outcomes for safety.

Henry Klassen, M.D. Ph.D., jCyte co-founder and the trial’s principal investigator, is pleased with the results thus far. He cautions that it is too early in the study to address treatment efficacy.

Dr. Klassen says that the therapy has two potential advantages over other stem-cell therapies for the retina. First, patients are not receiving immunosuppressive treatment to prevent rejection of the therapeutic cells. Preclinical studies showed that cells of this type did not elicit an adverse response (i.e., rejection) from the recipient’s immune system. Second, the injection of cells into the vitreous is simple to perform and less likely to cause complications than an injection of cells underneath the retina, which may be performed to deliver other stem-cell-derived treatments.


241 Responses to 'Stem-Cell Therapy for Retinitis Pigmentosa Safe Thus Far in Early Human Study'

  1. Jose E Vives says:

    God bless all of you, Im RP My Dr. From Bascom Palmer is Dr Biyrom Lam

    • Hemant D says:

      I am from India (Mumbai).
      Since 5 years I’m suffering from RP and now it has been very difficult for me to manage day to day work like reading,travelling,playing with my kids etc. hence My humble request to respected Doctors once you receive my comments kindly revert through an email along with detailed treatment procedures and Cost urgently.

      l.

  2. Tanya says:

    We want to participate in the trials but my husband has glaucoma. Do you know when he would be able to participate? I know that currently he is excluded because of this.

    • EyeOnTheCure says:

      The U.S. government website: http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. You will need to look at each trial to see whether or not you fit the inclusion and exclusion criteria. Some trials pay for travel and some do not and each trial should list a phone number where you can call for more information.

  3. Joon says:

    I am from India. I am suffering from RP. My gene defect is prph2. 2 of my brother and sister have the same genetic problem. Is it possible for us to take part in the stem cell trial

  4. Fiona Antcliff says:

    How do you signup for trails?

    • EyeOnTheCure says:

      The government website: http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. If you query in “DRY AMD”, you will see approximately 30 trials that are recruiting patients for clinical trials. You will need to look at each trial to see whether or not you fit the inclusion and exclusion criteria. Some trials pay for travel and some do not. However, each trial listing should include a phone number where you can call for more information.

    • My grandson has RP, he is 20 years old and in good health.

      Could you please inform me on how he could be considered for a trial.

      Unfortunately we live in the UK but would travel and even contribute to any treatment if needed.

      Hope you can help us.

      Many thanks.

      Regards
      Maureen Brooker

      • Dr. Tim Schoen says:

        Dear Maureen,

        The stem cell treatment described in the Blog is an example of one treatment that might be able to help your grandson. If your grandson still has vision (viable photoreceptor cells), he may be able to benefit from gene therapy. Accordingly, your grandson should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. Additionally, with a genetic diagnosis, he may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
        http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
        Your grandson should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
        Finally, you and your grandson may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • Janice May says:

      I live in Lewisburg, TN, a 72 yr old female with RP. I have central vision, little side vision, if any. I would very much like to take part in the stem cell trial. Florida location would be better, but willing to travel anywhere in the US. I am in good health otherwise.

      • Dr. Tim Schoen says:

        Dear Janice, The J-Cyte trial is currently fully enrolled but will open again soon as it moves to Phase 3. You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. With a genetic diagnosis, you may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
        http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

        You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
        https://www.myretinatracker.org/

  5. Tracey collins says:

    My son was first diagnosed with uveitis for 3yrs he was treated for this condition he was then seen by another consultant who diagnosed RP he had injection in his eyes for 2yrs however the he has not received any treatment for the last 6mths we live in Scotland he is 32yrs old he has had to give up work and his driving license which really knocked for six is there anyway he can be considered for these trials I’m afraid that if he has to wait any longer he will never regain his sight.

    • TFB says:

      Take a look at the Summer 2016 copy of Visions by the Univ of California at San Francisco Dept of Ophthalmologu for information on uveitis and treatment. It was recently mailed but may not be on the web yet.

  6. Manish Xavier says:

    Dear All,

    My Mother is suffering from RP…

    Her vision is almost gone….

    We are living in India….

    When we can expect this treatment available in India…

    Thank you…

  7. pauline a walters says:

    i sincerely hope when this procedure to cure rp will not cost an arma and aleg and will it be covered by insurance companies or not i am very happy to finally hear that there is acure coming i am on the last stage and i also wanted to know if my sight goes before the cure and i am totally blind will this procedure reverse total blindness

  8. kent truong says:

    I also would like to know if this will reverse blindness from patients with rp in their late stage.

    • EyeOnTheCure says:

      Dear Kent, it is too early to tell if stem cell treatments have the potential to reverse blindness. To restore functional vision, it will be necessary for three things to take place. First, the stem cells have to be in the correct location (subretinal space). Secondly, they need to differentiate into photoreceptor (rod and cone) cells. Finally, they need to make synaptic connections with the hosts secondary neurons such as bipolar or ganglion cells that transmit the signal to ganglion cells . It will also be necessary for the optic nerve to be intact and capable of transmitting a signal to the brain. In my opinion the most exciting stem cell vision restoration trials that are currently being conducted are the ReNeuron and J-Cyte trials. Here are links to both of these trials: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1
      https://clinicaltrials.gov/ct2/show/NCT02320812?term=jcyte&rank=1

    • Kim Ng says:

      Are you having RP too?

  9. Daniel Iki says:

    I have a friend with RP. She got it late in life and it is difficult for her. What do we need to do to get into the stem cell trials?

    She is 60+, will this be a problem? She lives in Hawaii, will she need to move to Calif.?

    • EyeOnTheCure says:

      Hi Daniel, In order for your friend to get into a stem cell trial, she will need to contact the clinical trial coordinator. Living in Hawaii should not be a problem if she can commute to L.A. Here is the weblink to Dr. Klassen’s stem cell trial: https://clinicaltrials.gov/ct2/show/NCT02320812?term=jcyte&rank=1
      Your friend should also consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. Also, with a molecular diagnosis, she may qualify for one of the gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      Whether the disease gene is identified or not, she should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Finally, stay tuned in to the Foundation’s website as new information is posted weekly. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  10. Shelley Johnson says:

    Are you accepting patients for trails. My mom is advanced stage and very interested in participating. My son and brother are also affected by RP so we are very anxious to find a cure and excited about this research. My son was in a trial in Dallas a few years ago. And my brother participated in a trial in Boston several years ago. We would be very interested in this promising research. Thanks for all you are doing!

  11. Muhammad Bilal says:

    My son is is also affected by RP. He is on initial stage. Now he is 7 years old and currently we feel he can not see at night specially in darkness. Please inform us when this cure will be available in market or in pakistan and how we can participate in trial

    • EyeOnTheCure says:

      Dear Muhammad, You should consider genetic testing for your son to try and identify the mutant gene responsible for causing his RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, he may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      You should also consider enrolling him in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      You may also find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

      I don’t have information on clinical trials in Pakistan but here is a listing of Medical institutes in India that have expertise in treating retinal disease. All of these institutes have highly trained ophthalmologist and are all well equipped:

      L. V. Prasad eye institute, Hyderabad, Telangana.
      http://www.lvpei.org/

      Shankara Netralaya, Chennai, Tamilnadu:
      http://www.sankaranethralaya.org/

      Aravind Eye Hospital, Madhurai, Tamilnadu
      http://www.aravind.org/

      Battu eye care, Dr. Rajani Battu, Bangalore, Karnataka
      http://www.peopletreehospitals.com/profile.php?article_id=154

      L.V. Prasad eye institute, Bhubaneswar, Orissa
      http://www.lvpei.org/contact-bhubaneswar.php

      All India Institute of Medical Sciences, New Delhi
      http://www.aiims.edu/en.html

    • Ahmad Jenkins says:

      My name Is Ahmad Jenkins, I’m from Florida I’m 36, and 6 years ago I was diagnosed with Rp. I would like to be involved in clinical trial. And or notified if something soon soon becomes available to those hoping for a cure. Thank you. What do you have to do to be involved on in clinical trials.

      • EyeOnTheCure says:

        Dear Ahmad, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
        http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
        Whether your disease gene is identified or not, you should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
        https://www.myretinatracker.org/
        You may also find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • Mubashar says:

      Salam! I am suffering from Rp. Do you find any treatment about that then please tell me. there is no hope for us
      03214099030

      • EyeOnTheCure says:

        Dear Mubashar, You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
        http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
        You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
        http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
        You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
        https://www.myretinatracker.org/
        Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • nawaz says:

      hello m Bilal same problems my Rp disease please contact us mobile No 923045264344

    • Mubashar says:

      i am also from pakistan. can i get you number?
      Ph 03214099030

    • MubStar says:

      Hi! i need to talk with you i hope we will share some value information about this
      my number is 03214099030

  12. maryam zafar says:

    My 4 year child got bardet beidle syndrome .he got RP ? Can something be done to prevent his vision from loss?

  13. luis de castro says:

    Dear All
    We live in Portugal. My Wife, now 59 years old, and a sister, 54years, have both retinitis Pigmentosa since they both have about 8 years old. their sight now is almost zero and their biggest drema was to see one day their Grand Children. We use to follow all that is happening in eye rechearch around the world and in Porugal Champalimaud Foundation makes also a lot of recearch not only in eye deseases but also cancer.
    if you think that it might be usefull bor both to fly to LA and see Dr Klassen and see if stem-cells can help them see better we will manege to go there anytime.
    best regrds Luis de Castro

    • EyeOnTheCure says:

      Dear Luis, Dr. Klassen’s trial is focused on slowing the loss of photoreceptor cells, not replacing them. Although there are several reports in the news media that some patients had improved vision following the treatment, we will have to wait for the published trial results to know for sure. I only know of two other clinical trials in the U.S. whose objective is to restore lost vision. One of these trials involves stem cells like the ones that Dr. Klassen is using. For more information on this trial, please see the following web link: http://www.blindness.org/ReNeuron
      The other trial involves a new treatment called optogenetics by the company, Retrosense. People with RP become completely blind if they lose all of their photoreceptors, the cells in the retina that make vision possible. RetroSense’s optogenetic therapy restores vision by bestowing light sensitivity to retinal ganglion cells, which survive after photoreceptors are lost. Retinal ganglion cells normally don’t process light; rather, they perform image-processing functions downstream.
      RetroSense’s optogenetic treatment is a gene therapy, which uses a human-engineered adeno-associated virus (AAV) to deliver a gene to retinal ganglion cells that encodes channelrhodpsin-2, a light-sensing protein. AAVs are being widely used as a delivery system in clinical trials of gene-replacement therapies. Unlike gene replacement, however, the optogenetic approach has the potential to work independent of the patient’s disease-causing gene — that is, the patient may not need to know his or her gene mutation to benefit from the treatment. To find out more about the Retrosense trial, please see the following weblink: https://clinicaltrials.gov/ct2/results?term=retrosense&Search=Search

  14. J R Kensenhuis says:

    Is it possible to sign up for the next series of trials and what are the requirements?
    I have RP and live in the Netherlands.

  15. Marilyn Van Meter says:

    I am hopeful to be a candidate for treatment for RP. It’s noticibly progressing, with driving, with night vision problems.

  16. I was wondering if there is any treatment for Retinitis Pigmentosa for a 30 years old male. do you guys offer any experimental Stem Cell surgery or Gene Therapy for RP?
    My friend is suffering from RP for 26years on both eyes and he has lost 70% of vision

    What are the possible options to save his vision and probably treat him

    Please reply back as it is very critical for me and him. to find a solutions to get his. eyes back, as at this point he is very disappointed and depressed.

    I will appreciate any suggestions from you guys.

  17. Joseph E Cook says:

    I am responding on behalf of my wife who was
    originally diagnosed in 2000 with RP only
    later to find out what if fact had was
    Usher’s II. We have previously submitted to
    participate in a research such as yours but
    have received no response.
    Good Luck and may God speed.

    • EyeOnTheCure says:

      Dear Joseph, Usher syndrome is the most common condition that affects both hearing and vision. There are three general types of Usher syndrome. For more detailed information on Usher syndrome, please see the following web link: http://www.blindness.org/eye-conditions/usher-syndrome. You will be happy to know that the Foundation Fighting Blindness is currently supporting a gene therapy trial for Usher type 1B. For more information on this clinical trial, please see the following link: http://www.blindness.org/foundation-news/usher-syndrome-gene-therapy-safe-thus-far-three-patients . In order for your wife to participate in any gene therapy trial, she must first positively identify the gene mutation. For more information on genetic testing, please see the following link: http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf Your wife may also want to consider enrolling in “My Retina Tracker”, a free registry that can help people find out about clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
      Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • Colleen says:

      How old was your wife when she started to have symptoms of RP? My daughter is 7 1/2 months old and we just discovered she has Ushers type 2. Thanks

    • RAHUL NIRKHE says:

      I rahul nirkhe from india mp ujjain age 37 years is suffering from RP. i diagnosed it 10 years back since then retina is degenerating . i want to know how many years it would take to finish the trials and treatment is readily available to across the world. We RP patients are in hurry because day by day we are getting more blind and our quality of life is deteriorating till we get the proper treatment.

  18. Sairam says:

    What is the latest update?
    Do we have any treatment available in near future and curious to know….Thanks…..

    • EyeOnTheCure says:

      Dear Sairim, Regarding the latest news on treatments for retinitis pigmentosa (RP), you should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  19. H.goyal says:

    I am also finding treatment of RP.PLS GIVE ME ADRESS OF TREATMENT.

  20. Gareth says:

    I am a long haul airline pilot and after being diagnosed with RP I lost my career and my driving licence overnight.
    One day I was flying 300 people across the Atlantic Ocean the next day I couldn’t even drive to the shops to buy a pint of milk.
    My whole world has been turned upside down.
    I would do anything to regain the loss of vision they say I have….

    • EyeOnTheCure says:

      Dear Gareth, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, you may qualify for one of the gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you again for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  21. Deirdre Murphy says:

    I have RP and MS I have my MS under control ( I hope) through diet and treatment. Losing my sight has me so scared for my future I will do anything to try and save or restore it. I am in Ireland I hope a treatment is available soon

  22. Phuah Hui Ping says:

    I am a patient of RP,I am from Malaysia, a mother of 2+ months mother,my vision is getting blurring,I am finding treatment of RP,please advise.TQ

    • EyeOnTheCure says:

      Dear Phuah, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  23. WEI TA CHENG says:

    I had two patients with RP, one was near no sight, but another elder one still can see something,it was he who want to improve and reserve his sight,
    what can we do for next ?

  24. Glory says:

    Thank you all for your hard work and research , I have a very good friend suffering from RP, this problem is really affecting is life, he hardly can do anything because of his sight. He is a 39 years old whose symptoms started around 9years old, he will be willing to participate in the trial, thanks

    • EyeOnTheCure says:

      Dear Glory, Your friend should consider genetic testing to try and identify the mutant gene responsible for causing his RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. Also, with a molecular diagnosis, he may qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your friend should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you and your friend may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  25. Michele Ward says:

    I am 30 years old. I have RP and manacular degeneration. I cannot drive nor have I ever. Doctor Robert Rosemen’s orders. I have 2 young sons I would love to see when they are up. My mother is 52 and she has RP as well. She is almost completely blind now. I’m looking for something that may help me keep what sight I have now if God willing. Please let me know if I could be a candidate. Thank you

  26. Ismael Mehdizadeh says:

    I am from Iran afflicted with RP. I am in mid forties and almost blind and want very much to participate in this trial. Please let me know what I can do to become a candidate for this trial. My life depends on it and I have no problem providing the funds. pls reply ASAP.

  27. Mia mai says:

    Hi,I am from Croatia, 31 years old, and I have RP. Can I participate and what is the procedure to sign up for this treatments?

    Thank you

  28. Ranganayi Musiyiwa says:

    I’m from Zimbabwe and would like to know if I would be able to be part of the clinical trials as well?

  29. Angela jones says:

    My wife has rp no night vision and now a very small field of vision she would love to be part of any trial. We live in Wales UK and if there are any studies or trials available could you recommend.

    • EyeOnTheCure says:

      Dear Angela, Your wife should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      Your wife should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, your wife may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  30. Hugh Ross says:

    Have you tried combining these stem cell progenitors with flu virus?

  31. Kingsley aituariagbon says:

    I 35 years old I have RP it’s not easy for me my vision is very bad please can I participate in the trial test?
    I am a Nigerian

    • EyeOnTheCure says:

      Dear Kingsley, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  32. Anchal kashyap says:

    Hi, my brother just 20 years old suffering from this disease. Right now he just facing night vision problem and doesn’t faces day vision problem. Doctors saying he will lost full vision in later ages. If there is any solution. We belong to india

    • EyeOnTheCure says:

      Dear Anchal, Your brother should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your brother should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you and your brother may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  33. Priyansahu says:

    Hi, I am from India and My Brother also have RP. Plz, Participate we too in this trial.

  34. Mery says:

    Hi, my bro is diagnosed with RP since 2 years ago. He is 43 years old. We are also seeking treatment for him. Is he able to participate in the trial? Thank you. GBU.

    • EyeOnTheCure says:

      Dear Mery, Your brother should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your brother should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, your brother may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing (including stem cell trials) will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  35. Habib Akhtar says:

    I am a patient of rp 50yrs old serving in agri dept. in pakistan may i be rescued through stem cell therapy

  36. Manu.p.ramchandani says:

    I am suffering from RP,plz participate for clinical trails.

    • EyeOnTheCure says:

      Dear Manu, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  37. Anakha says:

    Iam Anakha from India
    I have RP.How can I recatch my vision??Please help me…….

  38. Alycia Tetz says:

    This is amazing! I am 30 n have had RP all my life. My dad has it. My grandma has it. They have both almost lost all their vision. I’m scared to lose all mine. I struggle now but I have ways to get along for now… I hope this proves successful. I would love to participate in the study or future studies, I would do anything to see like my brothers and be able to have children with no fear of ruining their lives by passing this to them. God bless ur efforts I pray they are successful.

  39. Freddie Castleman says:

    I live in Dallas and would be interested in participating. Where do we sign up?

    • Dr. Tim Schoen says:

      Dear Freddie,

      The Foundation Fighting Blindness supports stem cell research directed at developing safe and effective treatments for retinal disease. FFB-supported clinician/scientist, Dr. Eric Pierce has teamed up with Reneuron (www.reneuron.com) to develop a stem cell treatment aimed at restoring vision in people affected by retinitis pigmentosa. To read more about this treatment, please see the following weblink: http://www.blindness.org/ReNeuron. To learn more about the ReNeuron clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1
      As the FFB article stated, University of California, Irvine researchers Henry Klassen, M.D., Ph.D., and Jing Yang, M.D., Ph.D., developed a stem cell treatment, which is aimed at preserving vision in people with RP and, potentially, other retinal conditions. They also co-founded the company jCyte, Inc. to advance it toward commercialization. To learn more about the human clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02320812?term=jcyte&rank=1

  40. marcin says:

    Hello! I am form Poland, (in Europe). I was diagnosed RP when I was young, now I am 38 and I feel my sight step-by-step it go in wrong way, than was before. In Poland I do not have any help in this case. I am afraid that soon I can lose job and my live will change completely on dark side of life. I have 6 years daughter and wife, I see that she is scared about me. If will be that opportunity I will fly to u.s.a unless I will count for any treatment in Poland or more probably in Germany bordering with Poland. I am aware that at the moment you can not help me but please write me, where can I track on internet (any Institutes in Europe or website useful ?) possibilities to cure the sight in soon, because I do not want to missed any chance. If appeared any chances to recovered retinas I would like to participate in treatment but have to know about it. I will left my email here just in case, maybe someone write me back s.marcin@icloud.com
    In Poland’s difficult to count on help from health institutions in this case, man is left to himself, or so it feels.

    You do great job! I belive that recults will come promising.

  41. Saad Borak says:

    Hi

    Please advise way forward to avail this treatment or to be considered for the trial. My mother is suffering from this disease for the last 10 years and now she has completely lost her vision.

    Thanks
    Saad
    +6591853181
    saad.borak@gmail.com

    • Dr. Tim Schoen says:

      Dear Saad,

      The Foundation Fighting Blindness supports stem cell research directed at developing safe and effective treatments for retinal disease. FFB-supported clinician/scientist, Dr. Eric Pierce has teamed up with Reneuron (www.reneuron.com) to develop a stem cell treatment aimed at restoring vision in people affected by retinitis pigmentosa. To read more about this treatment, please see the following weblink: http://www.blindness.org/ReNeuron. To learn more about the ReNeuron clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1
      University of California, Irvine researchers Henry Klassen, M.D., Ph.D., and Jing Yang, M.D., Ph.D., developed a stem cell treatment, which is aimed at preserving vision in people with RP and, potentially, other retinal conditions. They also co-founded the company jCyte, Inc. to advance it toward commercialization. To learn more about the human clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02320812?term=jcyte&rank=1

  42. Sherry Johnson says:

    My mother has rp and is almost blind from it. I have to see her struggle everyday, today I actually had to hd her as she is crying her eyes out because she can no longer see her TV screen. its heartbreaking. Is there anyway possible she can be a part of the next trails? and give her some hope. Thank You

    • Dr. Tim Schoen says:

      Dear Sherry,

      You and your mother should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type your mother has, she should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      Your mother should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      Your mother should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you and your mother may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  43. Kim Balde says:

    My mom has been diagnosed with RP since the 80’s. She’s completely blind and has been for the past 23-24 years. She will be 71 this year. Would she be a candidate for this?
    please advise thanks

  44. irfan munwar says:

    Dear All,
    My wife is suffering from RP…she is 26yrs old
    Her vision is almost gone….
    We are living in India….
    When we can expect this treatment available in India…
    Thank you…

  45. Manish says:

    Hi

    I am from India .

    My uncle is suffering from RP.

    Please tell is there any cure..

    If yes then kindly reply..

    We will be highly thankful to you..

  46. nawaz says:

    Nawaz ,my age 25 and night vision very lose I see 25% in night and day time 50 % losses vision my life very boring my brother 90 % and my uncle 95%lose vision please please contact me 923045264344

  47. Prakash Chavan says:

    My father is affected by RP.The initial stages were observed in his childhood. Please let us know if the treatment is already in market and where can he undergo the treatment? Also he would be interested in trials. He is 66 years of age and suffering from diabetes and high blood pressure. Thanks in advance.

  48. Pat Balgun says:

    I have rp. I will be most grateful if i can be part of your clinal trial. Thanks

    • Dr. Tim Schoen says:

      Dear Pat,

      You should consider genetic testing to try and identify the mutant gene responsible for causing your RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. Also, with a genetic diagnosis, you may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  49. Jennifer Chisholm says:

    We live in Northern Ireland and my grandson who is 5months old has been diagnosed with RP. Is there anything can be done for him. We would really appreciate any help or advice.

    • Dr. Tim Schoen says:

      Dear Jennifer,

      There is an excellent scientist in Dublin, Dr. Peter Humphries, who should be able to help you get to an RP specialist. Here is a weblink to contact information for Dr. Humphries: https://www.tcd.ie/Neuroscience/partners/PI%20Profiles/Peter_Humphries2.php
      You should definitely consider genetic testing to try and identify the mutant gene responsible for causing your grandson’s RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a genetic diagnosis, he may qualify for one of the ongoing gene therapy trials. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider enrolling your grandson in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  50. anil kumar says:

    hello im from INDIA suffering from RP along with two brothers and one sister. Im 56 now and almost blind. Pl let me know the status and prospect of your research and in what way you guide in this regard.

  51. Busabakorn vattasingh says:

    Hello
    My friend has been diagnosed having RP since 18 years old. He is now 67 and is suffering a very poor vision
    He is desperate and is willing to be part of your clinical trial. I fact he already applied to your study with an application code 933XHEYF for your phase II trial
    Pls kindly let me know if he got selected.
    Looking forward to your reply
    Thank you

    • Dr. Tim Schoen says:

      Dear Busabakorn,

      I hope that your friend will be able to qualify for the clinical trial. The HIPAA (Health Insurance Portability and Accountability Act of 1996) is United States legislation that provides data privacy and security provisions for safeguarding medical information. All clinical trials must abide by this regulation. Your friend will need to contact the center to find out if he was accepted.

  52. Raman says:

    Dear sir
    I’m form Indian and my husband 37years old is having same problem form last couple of years. He was fine before years before. We are really in big trouble. Can he participate if yes what is the procedure.

  53. Smita says:

    Hello
    I am suffering from RP and very eager to participate in your clinical trials.
    I live in Southern Southern California. Please advise how I can participate.
    God Bless You for all your efforts, research and investment into finding
    a cure for RP.
    Many thanks and best regards.

    • Dr. Tim Schoen says:

      Dear Smita, You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance: http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
      You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a genetic diagnosis, you may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document: http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  54. Mahesh says:

    Hello,

    My brother is suffering from RP and he had undergone few aurvedic treatments as well to get it cure. But looking forward for a treatment where he can get his vision better. From the past 4-5 years we have noticed his eye vision is going down.
    However, he is having stem cells stored during his son birth and hope I can get him participated in the trail.

    Awaiting for the positive response. Thanks.

    Mahesh

  55. Stephanie says:

    My mom has RP and she almost lose her vision..
    I am so worried and sacred..
    She’s so scared too…
    How can we register for the trial? I am desperately need help for my mom..
    We are from Hong Kong
    Please let me know …
    email: stephanieylchan83@gmail:com
    Thank you!!!

  56. Stephanie says:

    I am Stephanie..
    My email should be stephanieylchan83@gmail.com
    Many many thanks !!! I am desolately seeking for help to my mom

  57. majid jahangir says:

    Respected sir,
    My husband is suffering from RP from almost 12 years.He has lost his side view and can see throug central vision like tunnel.I am pleased to read about it research and hopeful soon u will get legal treatment of TO. I want to register my husband for to treatment. Hope u will cooperate us.
    regards.

  58. Dorothy Githu says:

    Hi my nice who is 9 year old was diagnosed with RP on her eyes she leaves in Nairobi kenya I will appreciate if she have a chance for trial.

    • Dr. Tim Schoen says:

      Dear Dorothy, Most clinical trials taking place in the U.S. are open to patients from around the world, if they are able to travel to the U.S. Your niece should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a genetic diagnosis, she may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      She should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

  59. Rajinder s.Dhody --patient name says:

    Hi My husband 69 yrs old ex-doctor is suffering with moderate to severe r.p.struggling in day to day chores.Desperate to try stem cell or any other treatment.I am general practitioner .we live in England. U.K.Any chance of taking part in triel or otherwise?thanks.Amar

    • Dr. Tim Schoen says:

      Dear Amar, Currently, there are no restriction preventing individuals who reside outside the U.S. from participating in U.S.-based clinical trials. As a “first step”, I suggest that you contact Moorfields Eye Hospital and get your husband an appointment with one of the excellent retinal clinicians.
      Here is the weblink: http://www.moorfields-private.co.uk/conditions/inherited-retinal-disorders
      You should consider genetic testing for your husband to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a genetic diagnosis, he may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your husband should also consider enrolling in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you and your husband may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  60. Kevin Rogers says:

    My dear wife Catherine is 46 now. She was diagnosed at age 31 with RP. In 2010 desperate not to watch the woman I love with all my heart go blind and deaf, I answered an ad from Alfred Alsup and Dr. Gonzales in MX, I spent most of my retirement money to finance the cord stem cell transplantation into both temples and behind each mastoid bones behind her ears. At the time Catherine as unable to drive or work. Following the treatment Catherine’s vision dramatically improved to the point that she got her DL and began work as a cosmetologist. She is now in desperate need of this new stem cell treatment. Her night blindness now prevents her from driving and it appears to us now that we may have been taken advantage of in 2010 and like the others in this thread I am desperate to help Catherine as all the other people in this thread have expressed. Will you notify us if there is the availability of this clinical treatment or is this too just a far off dream?

    • Dr. Tim Schoen says:

      Dear Kevin, I am sorry to hear that you and your wife were misled by a snake oil peddler like Dr. Sapse. Here is the weblink to the full story on Dr. Sapse: https://www.justice.gov/usao-nv/pr/man-sentenced-17-years-prison-phony-stem-cell-case

      If she has not done so already, your wife should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, she may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      Your wife should also enroll in FFB’s “My Retina Tracker”, a free registry that can help her identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you and your wife may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of “legitimate” clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  61. Camilla Dyke says:

    My daughter is 23 and was diagnosed with RP at age 4. Now she sees only a little light in one eye and nothing with the other eye. Are these studies seeing good results on restoring sight, or is it mainly to slow down the degeneration? Please contact me if your procedure could help.

    • Dr. Tim Schoen says:

      Dear Camilla, Individuals who have lost a substantial number of photoreceptor cells to disease and are at the light perception or hand motion level, may be able to benefit from several new sight restorative technologies that are currently being testing in human clinical trials. Currently, there are three promising technologies for sight restoration. They are: Visual Prosthetics, Optogenetics and Stem Cell photoreceptor replacement therapy. Visual prosthetic devices such as the ARGUS-2, developed by Second Sight, provides electrical stimulation of the retina to induce visual perception in blind individuals. To learn more about the ARGUS-2, please see the following weblink: http://www.secondsight.com Optogenetics is an exciting new technology that is able to convert non-light sensing cells in the retina into photoreceptor-like cells. Currently, Retrosense is conducting a human clinical trial in patients with RP. For more information, please see the following weblink: http://www.retrosense.com/development.html
      Stem cells hold much promise for sight restoration. However, like optogenetics, the safety and efficacy of stem cell treatments are still being evaluated in human clinical trials. ReNeuron is currently conducting a clinical trial to evaluate the safety and efficacy of a stem cell treatment to restore visual function in blind individuals with retinitis pigmentosa. For more information, please see the following weblink: http://www.reneuron.com/products/hrpcs-for-retinitis-pigmentosa/
      Thank you for your support that is enabling the advancement of safe and effective treatments for retinal disease.

  62. Colin jones says:

    My wife has rp and currently her vision is very restrictive she would do anything to get on any trial she is 61 very fit could you please advice thanks

    • Dr. Tim Schoen says:

      Dear Colin, If she has not done so already, your wife should consider genetic testing to try and identify the mutant gene responsible for causing her RP. If the gene is identified, she may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your wife should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help her identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you and your wife may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  63. rajesh kumar says:

    my wife also rp i donot know about treatment plz tell me is there any complete treatment of rp

  64. Pst. Onodiong Usen says:

    I am also one living with Retinitis Pigmentosa from childhood to about 28 years now. Thanks be to God that He has not failed me yet, and for this hopeful research. I am a Nigerian and so wish to be a beneficiary.

  65. Bhupendra singh mehta says:

    Hi i m 35 yr old indian suffring with RP since 2009. have a famely with two children.also jobless too. I m so thanks to you if enroll me for triel to treatment for RP.
    Thanx and regards
    Bhupendra

  66. Debbie Martin says:

    How can one sign up to be part of this (or any other legitimate) trial? My mother’s sight has degenerated to only discerning very bright light…nothing else. Please advise? God bless your efforts!

    • Dr. Tim Schoen says:

      Dear Debbie,

      The Foundation Fighting Blindness funds many clinical trials but does not manage the studies. Therefore, reaching out to them directly may be the best way for you to find out more about where they are happening and if participating is an option. The website: http://WWW.CLINICALTRIALS.GOV is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating. For many of the trial listings, there is usually a phone number listed that you can call for more information.

  67. adeel riaz says:

    also i have desises RP .my age is 23 year . i realy need yöur help . please reply me

    • Dr. Tim Schoen says:

      Dear Adeel, You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      You should consider genetic testing to try and identify the mutant gene responsible for causing your RP. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  68. Sanjeev bansal says:

    Suffering from r P.day and night veins not developed by birth but my vision decreases last four year and my age 36 year.What treatment is given in this therapy and when possible in India thanks

    • Dr. Tim Schoen says:

      Dear Sanjeev,

      If you have retinitis pigmentosa (RP), you should know that there are three inherited forms: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you and your daughter may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  69. Edward deleon says:

    I’m a marine corps vet and have been diagnosed with rp my vision is going fast. The VA said that they would assists in any way to help me get treatment when it becomes available.

    • Dr. Tim Schoen says:

      Dear Edward, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  70. Deb says:

    My husband is 50 years old and was diagnosed with RP as a child. He has night blindness and limited eyesight.

    Is there anything we can do to get him involved in these trials?

    Or information you can send to us with updates on research and where we can go to get this treatment.

    • Dr. Tim Schoen says:

      Dear Deb, Your husband should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, he may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      Your husband should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help him identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, your husband may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  71. Zaida Rivera says:

    Hi, my name is Zaida Rivera and I currently live in Jacksonville, Florida.
    I was diagnosed with RP when I was 21, I am now 57 years old. The RP progressed very slow until about 2 years ago when tests shows more progression. I can still drive but I find myself having to turn my head to each side to make sure I see who’s on each side, I don’t really see people next to me anymore unless they are right by my side.
    I would love to be considered for a study if there is something in my area in the near future.
    Can you please keep me informed.
    Thank you

    • Dr. Tim Schoen says:

      Dear Zaida, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  72. Dk Agrawal says:

    i m from Nepal, suffering from rp, i m 45 yrs old,my vision is poor at night as well during day also, if any cure plz inform.

  73. HOSA says:

    Recently, I search for some clinics (in India and China, etc) that claim for RP treatment based on stem cells. They mentioned, in their treatment patient can expect to see 20-30% (at least) improvement in visual ability during or after the 2 weeks treatment. Also, they say the treatment is safety.

    Would you please advise me in this regards?

    Than you

  74. Kurt Tolliver says:

    Hello this is Kurt Tolliver and I am 48 yrs old and I have RP. I was diagnosed at age 2. My mother had it and her father. I live in Port St Lucie FL and I would like to participate. I was also have had cataracts removed in both eyes.

  75. Liz Jones says:

    I was diagnosed with RP in my early 40’s. I am now 55 and have had a slow process of peripheral vision loss. I am more fortunate than most because I can function. I do have to be careful because I do miss things and I’ve had several bad falls from not seeing things. I live in Texas but I am interested in the study if they are looking for participants with my degree of vision loss.

    • Dr. Tim Schoen says:

      Dear Liz, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  76. Marcella guerriero says:

    How do I get on a waiting list for clinical trails
    For my rp
    Thanks
    Marcella

    • Dr. Tim Schoen says:

      Dear Marcella, The best place to find out about clinical trials is http://WWW.CLINICALTRIALS.GOV
      http://WWW.CLINICALTRIALS.GOV is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Most of the listings usually have a phone number for the clinical trial coordinator that you can call to get additional information.
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

  77. Crystal Kvernen says:

    Hello Everyone. My name is Crystal Kvernen. I am currently 32 years old. I was diagnosed with Unilateral Retina Pigmentosa that has affected my left eye at the age of 26 years old. After having my second son via C-section. The doctors at the University of Minnesota and at the Mayo Clinic both believed I had a slow progressing case…needless to say that is not the case because I now only have approximately a 1/8th left of my vision to the left eye. I also work as a new registered nurse on a cardiac step down unit. Are there any additional treatment options for patients with Retina Pigmentosa to access at this time?

    • Dr. Tim Schoen says:

      Dear Crystal, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information.

  78. Bostjan says:

    Hello,

    Iam 35 year old, recently diagnosed with RP. I am from Slovenia and I am wondering if trials will be conducted in countries nearby (Germany, France, even England)?

    I thank you for your answer!
    Bostjan

    • Dr. Tim Schoen says:

      Dear Bostjan, You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. As you will see, Clinical Trials.gov lists trials taking place all over the world.

  79. Girish Bhogle says:

    Hello My wife is suffering from RP since 2008 and her night vision is completely lost. When can we expect the results of the trials. We are from India.

  80. Ravi Dhungel says:

    Hi,
    I got to know about artificial retina and its possibilities of eliminating worldwide blindness from different internet sources. I am also an eye patient from Nepal possessing Retinitis Pigmentosa. On visiting many doctors in Nepal and India, I was told that treatment like artificial retina and retina transplant could only benefit patients like me and it is a genetic disease. We are three siblings. I am the eldest and I have two younger sisters. My elder sister is fully fine regarding eye vision. But my younger sister is having blindness too. Interestingly, she is having Stargardts’ Defect which is different than mine disease. This could be a good case for study under your research. I would like to know at what favorable stage this artificial retina has reached and when it will come as cure to patients like me? If possible, I am keen to participate in your study too so as to contribute this revolutionary global blindness alleviation treatment. I have also forwarded you my case summary provided by Sankara Nethralaya, Chennai, India on my last visit of 2014/15.
    With Regards,
    Ravi Dhungel

  81. Maria Doering says:

    My brother in law has very little vision left because of RP. He has been under the care of an eye specialist in the Charlotte area and asked about participating in trials. He was told that because his is 65 and has MS he would not qualify. He has amazed me with his resolve to remain active despite these conditions. He works out and has lost weight to maintain muscle control. Two conditions at once are very challenging, but he has remained positive in his outlook and proactive in taking care of his health. If he could be considered for trials, it would make a huge difference in his quality of life. He does day trading to supplement an early retirement, but this will be compromised if he totally loses his sight. Can you recommend anywhere in the US (hopefully Eastern US) where trials or private treatment might soon be available?

    • Dr. Tim Schoen says:

      Dear Maria, Your brother is lucky to have a sister like you. As you stated, because of his MS, your brother may not qualify for any of the stem cell trials currently taking place as the medication he is taking for the MS may influence his response to treatment. However, once the trials are completed and the treatment is available to the public, he should be able to obtain treatment.

  82. Hello,everyone
    Myself pradeep gurung and I am 22yrs old from(sikkim)
    India. Me nd my brother is suffering from RETNOSIS PIGMENT and slowly our vision is getting away. Please please . we would be grateful if there’s any treatment for us.

  83. Aditya Khanal says:

    Hello,
    I am from Nepal and i have been diagnosed with RP about a year ago. Is there any possibility of me getting the trial as my vision is worsening day by day.
    If preserving what i have is possible i would be very much greatful if fully healing is not possible.

  84. Jocelyn Laue says:

    Our 2 year old daughter has Cohen Syndrome and I’m afraid she will loose her vision one day from RP. Most if not all Cohen people are blind by age 40 or sooner from RP. Would this trial apply to our daughter? Or is the Cohens mutation a separate consideration/ different gene when dealing with RP? We would do anything and move anywhere to prevent our daughter’s blindness. She currently does not show signs of RP, but Cohen children start showing signs of RP around 5 years old. We live between Canada and Germany.

  85. dipak gheewala says:

    This is for my daughter. We would welcome any trial or treatment for RP.

    • dipak gheewala says:

      We live near Chicago, Illinois. DR. Kenneth Resnick in Elmhurst, IL is the doctor who has been seeing my daughter for RP over 13 years.

  86. Sabrina says:

    Hello.
    I am 23 and I am from Canada. Although my vision is not that bad yet but my brother, who is 29 has had a sudden deterioration in his vision in past 5-6 years. His reading ability is totally gone. Can we participate in the trials ?

  87. Kal says:

    We live in ny My son is 11 has rp do you recommend any place inside or outside the USA that can do stem cell or gene therapy

    • Dr. Tim Schoen says:

      Dear Kal, You should consider genetic testing for your son to try and identify the mutant gene responsible for causing his RP. If the gene is identified, he may be able to qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should also consider enrolling your son in FFB’s “My Retina Tracker”, a free registry that can help with the identification of clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  88. Lance Banion says:

    FFS get this shit dialed in! I’ve been hearing about “research” for years. We are getting old out here!!!!

  89. suresh agrawal says:

    my daughter 30 years old suffering from r p want to participate in trail

  90. Marc pouget says:

    My neighbor has RP I’m with him right now and we are wondering if you guys started the human trials yet.
    And what we would have to do for him to be a candidate thank you very much let me know

    • Dr. Tim Schoen says:

      Dear Marc, Stem cells hold much promise for sight restoration. However, the safety and efficacy of stem cell treatments are still being evaluated in human clinical trials. I am currently aware of only one stem cell trial in the U.S. that seeks to restore lost visual function. The British company, ReNeuron is currently conducting a clinical trial to evaluate the safety and efficacy of a stem cell treatment to restore visual function in blind individuals with retinitis pigmentosa. For more information, please see the following weblink: http://www.reneuron.com/products/hrpcs-for-retinitis-pigmentosa/

  91. P. Narasimha Rao says:

    I am suffering from RP. I am working as clerk at some Bank in India. My eye sight is almost gone. Please allow me to participate in the coming Trials. Please reply positively.

    • Dr. Tim Schoen says:

      Dear Mr. Narashimha, For retinal diseases like retinitis pigmentosa, it is primarily the photoreceptor cells (rods and cones) at the bottom of the retina that sicken and die. However, the overlying bipolar, horizontal, Muller and ganglion cells remain relatively intact. Therefore, if one could find a way to replace the photoreceptor cells, it might be possible to restore at least some functional vision. Presently, three new technologies hold promise for sight restoration. They are: Visual Prosthetics, Optogenetics and Stem Cells.
      Visual prosthetics (artificial retina) devices provide electrical stimulation of the retina and induce visual perception in individuals who have lost their photoreceptor cells. These devices may be able to help totally blind individuals with navigation, identification of objects as well as people’s faces. The most well-known visual prosthetic is the ARGUS-2, which is FDA-approved in the U.S. To read more about the ARGUS-2, please see the following web link: http://www.secondsight.com/
      Optogenetics is another exciting new technology that involves converting non-affected retinal cells such as ganglion cells into light-responsive cells. To accomplish this, the gene for the light-sensing protein opsin is spliced into a virus that selectively transfects ganglion cells, making them light sensitive. Retrosense, a biotechnology company in Michigan, is currently in Phase 2 human clinical trials to evaluate the safety and efficacy in patients with RP. For information on the clinical trial, please see the following website: https://clinicaltrials.gov/ct2/show/NCT02556736?term=retrosense&rank=1
      Stem cells hold much promise for sight restoration. However, like optogenetics, the safety and efficacy are still being evaluated in human clinical trials. I am currently aware of only one stem cell trial that seeks to replace lost photoreceptor cells. ReNeuron, a U.K. company, is currently conducting evaluating the safety and efficacy of a stem cell treatment in blind individuals with RP. For information on the clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/results?term=retrosense&Search=Search

  92. Lisa Bonner says:

    Hello, I am from Texas and I have been diagnosed with RP 8 yrs ago. A few days ago, my vision has worsen. I am having a hard time accepting the vision loss. I am going to California to visit a friend next week. I am hoping I can see someone who can help me. Hope to hear from someone soon. May God bless the People who has been working on the treatment. I have not giving up my faith and pray the cure will come soon.

  93. Vikrant Gaonkar says:

    Hi,
    I would like to participate in these trials as well. I have RP which was diagnosed many years back and I face difficulties in my daily life with work and commuting. Its becomes a difficulty for me while travelling and sitting out with colleagues as well. Can this help me restore my vision to atlease some extent where my daily life becomes a bit easier.

    • Dr. Tim Schoen says:

      Dear Vikrant, Until the results of the clinical trial are published, we won’t know if Dr. Klassen’s / JCyte stem cell treatment is able to restore lost functional vision. It is my understanding that the JCyte stem cell treatment is focused on slowing photoreceptor cell death. For retinal diseases like retinitis pigmentosa, it is primarily the photoreceptor cells (rods and cones) at the bottom of the retina that sicken and die. However, the overlying bipolar, horizontal, Muller and ganglion cells remain healthy. This raises hopes that subretinally-placed stem cells that differentiate into photoreceptor cells and form synaptic connections with host cells could possibly restore lost functional vision. Functional vision restoration might also be possible with visual Prosthetics and Optogenetics.
      Visual prosthetics (artificial retina) devices provide electrical stimulation of the retina and induce visual perception in individuals who have lost their photoreceptor cells. These devices may be able to help totally blind individuals with navigation, identification of objects as well as people’s faces. The most well-known visual prosthetic is the ARGUS-2, which is FDA-approved in the U.S. To read more about the ARGUS-2, please see the following web link: http://www.secondsight.com/

      Optogenetics is another exciting new technology that involves converting non-affected retinal cells such as ganglion cells into light-responsive cells. To accomplish this, the gene for the light-sensing protein opsin is spliced into a virus that selectively transfects ganglion cells, making them light sensitive. Retrosense, a biotechnology company in Michigan, is currently in Phase 2 human clinical trials to evaluate the safety and efficacy in patients with RP. For information on the clinical trial, please see the following website: https://clinicaltrials.gov/ct2/show/NCT02556736?term=retrosense&rank=1
      Stem cells hold much promise for sight restoration. However, like optogenetics, the safety and efficacy are still being evaluated in human clinical trials. I am currently aware of only one stem cell trial that seeks to replace lost photoreceptor cells. ReNeuron, a U.K. company, is currently conducting evaluating the safety and efficacy of a stem cell treatment in blind individuals with RP. For information on the clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/results?term=retrosense&Search=Search
      Stem cells hold much promise for sight restoration. However, like optogenetics, the safety and efficacy are still being evaluated in human clinical trials. I am currently aware of only one stem cell trial that seeks to replace lost photoreceptor cells. ReNeuron, a U.K. company, is currently conducting evaluating the safety and efficacy of a stem cell treatment in blind individuals with RP. For information on the clinical trial, please see the following weblink: https://clinicaltrials.gov/ct2/results?term=retrosense&Search=Search

  94. Hope says:

    Dear Dr. Henry Klassen and you whole team,
    You are the hope of millions, and beyond.
    Your work is very honorable.
    You have all the sincerely respect of millions worldwide.
    I do wish you all very well and success.

  95. James Gardner says:

    I’ve had artificial lenses put into my eyes because of cataracts and suffer from rp. Will the artificial lenses knock me out of the trial? I’m totally blind in dim light rooms and of course at night. My peripheral vision is down to the 20 degree range. Is my vision to far gone to be saved?

  96. Raj Shekhar says:

    Excuse me sir/mam my dad suffers from RP and glaucoma and he is currently aged at 51 years. Can we apply for the trial and does it recover the loss completely?

    • Dr. Tim Schoen says:

      Dear Raj, Your father should consider genetic testing to try and identify the mutant gene responsible for causing his RP. If the gene is identified, you may be able to qualify for one of the gene therapy trials currently taking place. Additionally, if the gene is identified, it is possible to find out what types of research are being done on the gene and protein. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Your father should also consider enrolling in FFB’s “My Retina Tracker”, a free registry that can help him identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Your father may also find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Here is the weblink for the J-Cyte stem cell trial: https://clinicaltrials.gov/ct2/show/NCT03073733?recrs=a&cond=Retinitis+Pigmentosa&draw=1&rank=7

      I hope you found this information useful and thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  97. Isaiah says:

    I suffer from RP and would love to be able to participate in this trial in hopes that I regain my eye sight back. I am only 18 and have been told that driving is impossible. Please send me more information.

  98. Jack Yang says:

    Hi,
    My wife is 34 and has RP. We did DNA match with our 1.5 year old boy and RP is with him as well. We are from Taiwan and hope to get more information on the trial or any latest updates.

    Thanks

    • Dr. Tim Schoen says:

      Hopefully, the genetic testing identified the gene responsible for causing your wife’s and son’s RP. If the gene was identified, he may be able to qualify for one of the gene therapy trials currently taking place. Additionally, with a specific genetic confirmation, it is possible to find out what types of research are being done on the gene and protein using Google and PubMed.
      For more information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      You should consider enrolling your wife and son in FFB’s “My Retina Tracker”, a free registry that can help you identify clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      Finally, you may find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials. Each listing provides information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  99. Gokul says:

    This is Devarajan,Gokula Krishnan (Gokul) and I am Glad to hear that you are conducting Clinical trials for RP. Unfortunately, my wife is suffering from RP and we would like to participate in this program but it would be great if you could provide us more information about the program especially location of the program.

    At this moment, we are in Charlotte, NC and let us know is there any nearby location in case of any frequent followups or visits.

    • Dr. Tim Schoen says:

      Dear Gokul, I am not aware of any stem cell trials for RP in the vicinity of Charlotte, NC. However, you will be happy to know that FFB-supported clinician/scientist, Dr. Eric Pierce at Harvard, has teamed up with a U.K. biotech company, Reneuron (www.reneuron.com) to develop a stem cell treatment aimed at restoring vision in people affected by retinitis pigmentosa. To read more about the treatment, please see the following weblink: http://www.blindness.org/ReNeuron. To access the listing on the Clinical Trials.gov website, see the following link: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1

  100. Sajad says:

    My son is, suffering from RP. He is 23 years of age. He is on late stage of RP. Please help me. What should i do for my son.i cannot see him geting completely blind. Pkease help me.

    • Dr. Tim Schoen says:

      Dear Sajad, You should consider genetic testing to try and identify the mutant gene responsible for causing your son’s RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. Additionally, with a genetic diagnosis, your son may qualify for one of the gene therapy trials currently taking place. For information on genetic testing, please see the following web link to download a PDF document: http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Regardless of whether your gene is identified, your son should consider enrolling in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      You may also find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

  101. Lyndis Alexander says:

    I am 69 and my brother is 73 we both have R Zp I only have straw vision in both ryes and my brother has straw vision in only one eye we would luke to recieve letters of the most recent research thsnk you Lyndia Alexander

    • Dr. Tim Schoen says:

      Dear Mr. Alexander, Thank you for your interest. In order to receive free monthly scientific updates on treatments for retinal disease, you will need to contact the Foundation Fighting Blindness, either by phone or email. E-mail: info@FightBlindness.org
      Toll Free: (800) 683-5555
      TDD: (800) 683-5551
      Local: (410) 423-0600
      Local TDD: (410) 363-7139

  102. Omolue Peter says:

    Am Peter, 49years from Nigeria. i have RP and my central vision is completely lost but i can scarcely see with my Peripheral vision. Can i participate in the Stem cell trials? Phone contact: +2348054109019

    • Dr. Tim Schoen says:

      Dear Peter, It is possible for people outside the U.S. to participate in U.S.-based clinical trials. 3. Stem cells hold much promise for sight restoration. Besides Dr. Klassen’s / JCyte trial, ReNeuron, a U.K. company, is also conducting a clinical trial to evaluate the safety and efficacy of a stem cell treatment in blind individuals with RP. For more information on the ReNeuron trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1

  103. Carolia Russell says:

    My husband, 60 years old lost his vision on both eyes to RP about 10 years ago. Could he participate in one of your trials?

    • Dr. Tim Schoen says:

      Dear Carolia, For people like your husband that have RP, it is primarily the photoreceptor cells (rods and cones) that sicken and die. Since these are the cells that detect light, once they are gone, functional sight is lost. However, other neurons that are present in the retina remain healthy. This raises hope that functional vision might be restored using one or more of the new technologies listed below.

      1. Visual prosthetics (artificial retina) provide electrical stimulation of the retina and induce visual perception in individuals who have lost their photoreceptor cells. These devices may be able to help totally blind individuals with navigation, identification of objects as well as people’s faces. The most well-known visual prosthetic is the ARGUS-2, which is FDA-approved in the U.S. To read more about the ARGUS-2, please see the following web link: http://www.secondsight.com/

      2. Optogenetics is another exciting new technology that involves converting non-affected retinal cells such as ganglion cells into light-responsive cells. To accomplish this, the gene for the light-sensing protein opsin is spliced into a virus that selectively transfects the ganglion (output) cells of the retina, making them light sensitive. Retrosense, a biotechnology company in Michigan, is currently in Phase 2 human clinical trials to evaluate the safety and efficacy in patients with RP. For information on the clinical trial, please see the following website: https://clinicaltrials.gov/ct2/show/NCT02556736?term=retrosense&rank=1

      3. Stem cells hold much promise for sight restoration. However, like optogenetics, the safety and efficacy are still being evaluated in human clinical trials. ReNeuron, a U.K. company, is currently conducting a clinical trial to evaluate the safety and efficacy of a stem cell treatment in blind individuals with RP. For information on the ReNeuron trial, please see the following weblink: https://clinicaltrials.gov/ct2/show/NCT02464436?term=reneuron&rank=1

  104. Mayra Morales says:

    Hello my sister and I have RP we both are in the middle stage of RP we live in Florida. Can we participate in the trial? I am 27 and my sister is 29
    thank you

  105. David Chase says:

    Id be interested in participating in a stem cell therapy trial if one becomes available near Atlanta, GA or would travel within the United States if travel, lodging and meals were provided. I have Retinitis Pigmentosa and am legally blind, with approximately 2 degrees of vision remaining in my left eye only.

  106. Fil says:

    Hi all, i have RP and undergoing stem cell and noticing some promising improvement and test result confi rmed! If any of you want to try, i can give some details when I get back to UK. Kind regards, fil.

  107. Vale says:

    hI, i am 32 years old i i would like to participate on this trial. How can i do that?

  108. I am 38 years, a Nigerian, who was diagnosed of retinitis pigmentosa 5yrs ago please can I be given the opportunity to be part of the stem cell trial

  109. I will appreciate it If I can be part of the stem cell trial for retinitis pigmentosa

  110. Nonilon Tolentino, 09186413339 says:

    Hi, my son was diagnose with RP 3 years ago.
    He is now 22 years old. Me and my wife have
    sent him to several doctors trying to look
    a cure. We are hoping and praying for your
    success in discovering the cure for this
    illness. Kindly update us in the progress
    of your work. We are very much willing to
    volunteer our son to be a part of your work.
    He has blurd vision on his left eye and a
    partial vision on the right. We are from the
    Philippines.

  111. Walter Synek says:

    Good Morning, my wife was diagnosed with RP a few years back and she lost most of her peripheral vision already. She is 43 years old and I am looking to find a way to help her. Is there any chance she can participate on these Trials?

  112. Oralia Valadez says:

    My husband was diagnosed with RP just a few weeks ago, after a few years of different doctor unable to say what it was. We live in San Antonio Tx. Are there any stem cell study clinics
    here that we could possibly look into? Thank You

  113. Chris Persson says:

    I’m 37 years old and have recently diagnosed with rod/cone dystrophy. Is it possible for me to become a participant in this clinical trial?

  114. steve jennings says:

    My wife has RP and has one percent vision left.
    was diagnosed at age 26 and is now 58.
    her sister was diagnosed at 35 and is now 56 with two percent vision left.
    would this treatment be able to help them.

  115. Kumar says:

    hi, Would like to know the present vision recovery for RP impact. My Brother has a RP Problem. Pl. advice how can we approach you to get better clarity on his vision. Thanks

    We are from India, Chennai.

    +91-7010064144

  116. Milind Pande says:

    Hi, My wife is suffering from RP, looking for some treatment.
    I am leaving India, kindly suggest.

    Regards.

    Milind

  117. Rebecca Coffman says:

    I am 42 I have been legally blind with RP since I was 30 my mother is 71 & my daughter is now 18 so it runs now 3 generatios in my family. We would love to be part of any research study that comes available I have already had cataracts taken off both eyes ,& have no peripheral vision & my mother can only see pink or blue colors at times. We want to find a cure before my daughter starts losing more of her vision.thank you from Alabama.

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