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ARVO 2016: What Does It Take to Develop a Stem-Cell Therapy for the Retina?

Drs. Jeffrey Stern and Sally TempleThe effort to restore vision lost to retinal diseases using stem cells can sound so tantalizing simple. The researcher gets some stem cells, turns them into retinal cells, puts them in the patient’s retina to replace lost cells and—voila!—the patient can see again.

But the reality is, such a procedure can be mind-blowingly complex, and there is no one-size-fits-all therapy for people with conditions such as age-related macular degeneration (AMD) or retinitis pigmentosa. There are innumerable considerations for researchers developing therapies. Here are just a few:

  • What type of stem cells should be used? Those taken from blastocysts (stem cells often referred to as embryonic) or those derived from patients’ skin or blood (induced pluripotent stem cells)? Blastocysts require less manipulation than induced, but can raise ethical concerns for some people.
  • At what stage of development should the cells be transplanted into the eye? When they are fully mature or partially developed? The latter may have a better opportunity to integrate into the retina, but also may turn into an unwanted type of cells and compromise the safety of the patient.
  • Do you inject them as a bolus (i.e., a ball of liquid) and give them an opportunity to naturally migrate to where they’re needed? Or do you put them on a supporting scaffold, to keep them properly oriented, and perhaps increase their chances for survival?
  • Do you need to suppress the patient’s immune system? The eye is potentially protected from immune insults by the blood-retina barrier on the outside of the retina, but this barrier is often degraded in people with retinal diseases.
  • And which patients do you target for the treatment—those in the early or late stage of their disease? For each therapy, there will be different windows of treatment opportunity.

These issues constitute just the tip of the proverbial iceberg; there’s so much more to consider, including clinical-trial design, therapy manufacturing and regulatory compliance.

Before the start of the 2016 annual meeting of the Association for Research in Vision and Ophthalmology (ARVO), the Foundation Fighting Blindness Clinical Research Institute (FFB-CRI) and Casey Eye Institute at Oregon Health & Science University hosted “Innovation Summit: Retinal Cell and Gene Therapy.” It convened many of the world’s best retinal surgeons and stem-cell and gene-therapy developers to share their insights and lessons learned in taking on these important questions and challenges.

While there were seven outstanding stem-cell presentations during the summit, I want to highlight two that were particularly intriguing.

Jeffrey Stern, M.D., Ph.D., co-founder of the Neural Stem Cell Institute (NSCI), discussed how the human retina has its own resident stem cells, which his group is working to harness as a therapy for diseases like AMD. In AMD, the disease causes degeneration of supportive cells known as retinal pigment epithelium, or RPE. When RPE are lost, the photoreceptors, the cells that make vision possible, die off as well, and central vision is lost.

Along with his wife and NSCI co-founder, Sally Temple, Ph.D., Stern is leading an effort to coax dormant stem cells in the patient’s retina to become new RPE. While it isn’t as far along as other RPE-replacement therapies, some of which are in early clinical trials, the NSCI “grow your own” approach would avoid many of the issues—including immune-system reactions, manufacturing and transplantation—associated with other stem-cell therapies.

I’d also like to applaud the opening stem-cell presentation delivered by consultant Jane Lebkowski, Ph.D. She has been involved with the California Project to Cure Blindness, which launched a clinical trial of an RPE-replacement therapy derived from blastocysts. She gave a nice summary of the many considerations one must make in launching a human stem-cell study. I have no doubt that the many summit attendees working toward clinical trials found her discussion to be invaluable. There’s nothing like experiential knowledge from someone who has successfully met the challenge you are trying to conquer.

The two-day summit included 25 presentations and 150 attendees. It was the third ARVO-associated summit hosted by FFB-CRI and Casey.

Pictured, above: Drs. Jeffrey Stern and Sally Temple attending ARVO 2016 in Seattle. 

 


119 Responses to 'ARVO 2016: What Does It Take to Develop a Stem-Cell Therapy for the Retina?'

  1. KALEB LANE says:

    I HAVE RECENTLY BEEN DIAGNOSED WITH RETINITIS PIGMENTOSA. I AM 29 , MARRIED WITH A 2 YR OLD DAUGHTER. I AM SCARED. I LIVE IN CORPUS CHRISTI TEXAS. CAN I GET INVOLVED IN A CLINICAL TRIAL AND HOW DO I GET SIGNED UP. PLEASE HELP ME

    • EyeOnTheCure says:

      Kaleb, 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. 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 the disease gene is identified or not, one 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.

    • SwatiD. says:

      hi I am swati from Mumbai India. if u got any treatment for retina pigmentosa . please tell me. thank u.

    • Barry Rapavy says:

      My 16 year old son just got diagnosed… Believe me, I share your fear !! We are going to NIH (located in Bethesda, MD) for genetic testing in a couple weeks. It is not easy to get into NIH, but you should try. We also have an appointment at Johns Hopkins in Baltimore.

    • My son has ONH and I’m looking for some one too I also live in Texas houston!

    • Calvin Vaillancourt says:

      Hi Kaleb,

      I’m 29 and have Retinitis Pigmentosa as well. I live in Maine. I work as an Outdoor Teacher and Guide. It’s scary at times. I honestly came on this site looking and hoping for good news as well. But it’s not always bad. I’ve known about this condition since I was 12 and I can honestly tell you it gets easier. It’s a slow progression and you never know how bad it will get but I have gotten to know so many intelligent and capable low vision and blind people over the years they give me hope as well. Don’t look too long at the closed door. I’m more motivated to keep in shape and stay physically strong and active because of my disease. While at the same time i’ve seen so many of the people around me begin to age and let themselves go. Stay strong and find what makes you you and never let go of that.

    • Mark says:

      I found out that I had RP a number of years ago. I’m 54 now and while my eyes are getting worse I still drive and do normal things. I was really scared at first and it was very difficult. Since then I’m just living my life at the fullest everyday.

  2. Becki Hutchison says:

    We are looking for a Doctor to HELP my husband to get his vision back,or better than it is now..as of a few weeks ago he was able to manage alot better than today. He has been going for the injections in the eye for the Wet Macular degeneration in his right eye for almost 2years now….it’s gotten to where he now sees out of a small corner of the eye. I want to try to find out how to get him into the researchers program so we can continue with our motorcycle rides and travels. He is 71years young.

    • EyeOnTheCure says:

      Becki, wet AMD accounts for about 10 percent of all cases of macular degeneration. Wet AMD is also called choroidal neovascularization (CNV), subretinal neovascularization, or exudative or disciform degeneration. In wet AMD, abnormal blood vessels grow beneath the macula. These vessels leak blood and fluid into the macula that damage photoreceptor cells. To read about FDA-authorized treatments for wet AMD, please see the following link: http://www.blindness.org/macular-degeneration#available-treatments

      The government website: http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. If you query in “wet AMD”, you will see approximately 67 trials that are recruiting patients for clinical trials. Here is the web link: https://clinicaltrials.gov/ct2/results?term=wet+amd&recr=Open&no_unk=Y

      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. Each trial should list a phone number where you can call for more information. I hope this helps.

    • Kara Booth says:

      Hi Becki- I read you post from May and am looking for a reputable specialist for my dad. Were you successful finding someone to help your husband?

  3. Azilee Tea Leavell says:

    I am do afraid right now I do have retinitis pigmentosa, and I can’t deal with the fact that I am going blind..I keep asking myself why ne?What did I do, to deserve this…I have a granddaughter that will be a year old. She 9nly weight 2 lbs, 10 oz.. and she 8s almost 18 lbs and will be a year old on the 13 of This month. I cry every night. Because 8 can tell my daughter that I will be blind..I don’t know what to do. I Feel so alone. And I can’t afford some of the treatment, but I pray that God don’t take my sight total. She-s such a sweet bsby, and my daughter live in Texas, do you tango me everyday, so I can see her. I cherish every moment, bec as use one day I want be able to see her..please pray for me..sincerely Tea Leavell

    • Christina Bailey says:

      Prayers to you.

    • Sue Hirsch says:

      I was diagnosed with RP 1980 found out if gave it to 2 of my kids, devastating, went to Dr. Heckenlively at UCLA he said the only thing for now is vitamin C E and A, daily i take 1000 c 800 e 80,000 a I am almost 65 now and my front vision is still pretty good, Dr. Peter Zeegen said that my cones and rods are still good, no peripheral but happy with what i have. So please take the vitamins and be the best that you can until they come up with a cure. I am proof that vitamins will prolong the blindness. 7-16-2016

  4. Lal sahab says:

    Good afford
    Thanks

  5. Kelly Poyer says:

    My son (13yrs) has Best’s Disease. It is so great to read of all the trials and gene therapy. It gives so many hope that they will not lose their sight or may get there sight back one day.

  6. Denise says:

    I have diabetic retinopathy Eileen with one eye and have problems with my left eye now I was hoping if you have any idea what I could to what’s out there for me?

  7. Saira says:

    Will this research be applicable to retinal detachment due to ROP ? My 10 year old son lost his vision completely 5 years back he has gone through multiple vitreo retinal surgeries but couldn’t get his vision back. I keep reading up on research being done for AMD and retinis pigmentosa, is it the same for ROP ? Looking forward to your prompt response. Thank in advance.

  8. Jesse Hernandez says:

    My wife has been diagnosed with RP. She is 41 and has lost 80% of her peripheral vision. Could you please put me on your mailing list for updates on your progress with Stem Cell research. This is something we would like to explore as treatment when it begins clinical trials.

  9. Jesse Hernandez says:

    We also donated birth material for stem cell research when our daughter was born.

  10. Shirley Picknell says:

    Hello, I have Retinitis Pigmentosa, and I’ve been looking for a cure or someway to improve my vision now for 20 years. I’ve worked in a nursing home since being diagonsed with in 1995 with limitations of not doing what other people can do. I pray that i can get something done and will be able to continue working for at least 20 more years and see my family continue to grow….

    • Hi, I am a 85 year old man and have RP it is a progressive disease I wasn’t diagnosed until I was 40 years old.
      My periferal is now an 8 inch window. I am now taking drops for glaucoma which my eye doctor thinks will lower pressure and is a help.
      I take vitamin A and several eye supplements and this has maintained my central vision! Drink lots of water avoid bright sunlight always wear wrap around sun glasses.
      Lets pray that the stem cells are available soon!!

  11. seheey says:

    I live in West Africa I was diagnosed with retinitis pigmentosa since i was 2 years old, the doctor advise my parent not to do anything because there is no cure and she believe that by 7 years i will be blind,I was young i went through my life i went to college and graduate with Master degree,yes i have a very high challenges with my sight still could not see like normal,Now i am 30 years old went back to see the same Doctor she was surprise and she told me there was no changes from what she saw when i was 2 years old till now,i am looking for how to get into the researchers program.Please help

    • EyeOnTheCure says:

      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 the disease gene is identified or not, one 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.

  12. I have been diagnosed with Retinitis Pigmentosa. I am 64 years old. I live in Athens Greece. How I can get involved in a clinical trial?

    • EyeOnTheCure says:

      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 the disease gene is identified or not, one 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.
      I hope you find this information helpful. Please let me know if there is anything else I can help you with.

  13. Darryn Spall says:

    clinicaltrials.gov an NiH website has many trials for RP.
    Or you can go to Turkey the Firatti clinic. Many people say he can cure RP with electroacupuncture.They are many sucess stories on Youtube.

    • EyeOnTheCure says:

      There are no published scientific articles showing that the electroacupuncture treatment from the Firatti clinic in Turkey is able to slow disease progression or restore functional vision.

    • Clinical Scientist @ CIRM says:

      Please be careful of recommending clinics like this. RP cannot be cured currently and electroacupuncture would not even be appropriate for the disease.

    • Hanan says:

      Plz do you know the exact address of the turkish center??
      My dad has RP

  14. Darryn Spall says:

    It is not much comfort to know- but you are not alone Tea. I can understand the fear of being completely blind. I am 80% there already. We have to just try to be strong and be a man and face up to whatwe can’t change if that’s how it turns out.

    Good luck man.
    Darryn U.K. in Vietnam now.

  15. doris Grierson says:

    I know how you feel I have not found a place where they would do ritnal treatment I got partially blind for high blood pressure not attended even though I went ten times to the hospital so do you know of anywhere where they do stem cell for retina partially damaged and I feel for you but pray maybe dr’s will find help. doris

  16. Kathy says:

    Had problem with retinoschisis in 2012. Had surgery for membrane pucker. Vitrecromy and planing prior to schis. Having known about having stem cell therapy , maybe this would have helped me. Ended up that the schis is tore after I was hit as a pedestrian by a car driving towards me. I lost a lot of vision in that, my only good eye. Lost my photoreceptors, rods and cones slow to coming back. Vision still messed up for close up and distant vision. Was wondering if you could help me? How much does stem cell therapy cost? Where is it being done? Any names of Dr.’s doing it in southern CA. Or any trial studies?

  17. tain naga says:

    My mom has been diagnosed with RP. Totally shattered to know that there is no cure for it. But now I feel there is a hope

  18. Christina Bailey says:

    Hi, my brother has been suffering from RP his whole life. He is 30 now and about to lose his vision for good. He is so scared and about to give up. How can he get into the clinical trials? I am desperate and want to help him!!

    • EyeOnTheCure says:

      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, 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
      Whether the disease gene is identified or not, one 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. I hope you find this information helpful. Please let me know if there is anything else I can help you with.

  19. Perri Rechner says:

    My mom was diagnosed with RP at 69 years of age. Alzheimers/Dementia at 75. Has never seen three of her 4 granddaughters though one lives in the same home and other two live around the corner. She’s 83 and has hope for a cure but it may not happen in her lifetime.

  20. Biraj Bhandari says:

    That’s awesome information. So I was wondering when will the procedure be approved to perform to general public with RP.

    Thanks

  21. Warren Luedke says:

    My wife has been diagnosed with AMD and has received injections of Avastan in both eyes. It has had temporary success. AMD has now progressed to the point where her retina specialist is going to try Eylea. I have developed an interest in stem cell research and about to receive stem cell injections on my knee for osteoarthritis.

  22. Ever hopeful says:

    My husband also has rp, he is 42 and vision is getting steadily worse, he fears not being able to drive or work, we have a young family. He has not registered anywhere stating he has rp we only know about the condition because his dad has it. What can we do without risking his licence and job?

  23. Abdallah I El Tawil says:

    My MOM (75 years) has ARMD, she has been taking the shots but lately her vision deteriorated, she does not see with one eye and sees little with the other. She is willing to take the stem cell treatment. Is it offered anywhere in the US or Europe?

  24. Teoh says:

    My mom was blind for about more than 10 years. Diabetes. Age 70. Lossed 2 legs. She hope she can see again for the less of her lifetime. Hope any doctor can help her.

  25. ameer hamza jillani says:

    my brother is the patient of retinitis pigmentosa is there in cure in the world that can bring is eye sight back if there is any thing please tlet me know for god sake

  26. ALAN BENNETT says:

    I Lost vision in my left eye after 5 retina surgeries and it started in 2007. I am 69 years old I would love to Stem Cells to regenerate the retina in my left eye. Is there any possibility of the Stem Cells to be ready for me in the next 2 years?

  27. Terri Zandbergs says:

    Hi Im 35 now but lost sight in my right eye due to the retina collasping i have had lazer till they couldnt fit any more in i have had 3 retina operations with the oil failed within 3-5 days after operation and i have also had a buckle put in but that failed to i am a type 1 diabetic and just wanting to know is there any hope out there i keep asking for help but i get no where i also live in Australia.

  28. William cole says:

    I have been diagnosed with optic neuropathy I am interested in your stem cell research and wonder if it’s available for what I’ve I’ve been diagnosed with if so let me know who I should contact

  29. Brenda H Diel says:

    Lost sight in my Left eye 4 yrs ago. Although I can see light. At present I have silicone in my eye that has been in the eye over a year. I have had 6 procedures with no success. I still have hope that one day I will be able to see. I research the Internet every three months to see what has been made available to correct my vision. I am very interested in being in a program to help develope the research to cure this disability. I am blessed with 20/20 in my right eye and very thankful for that. Thank you for your continued research. X

  30. Taylor Papadopoulos says:

    Hello-
    I am 26 years old and was just diagnosed with Wet Macular Degeneration in one of my eyes. I currently get eylea injections once a month; I started with Avastin but unfortunately this drug did not stop the leaking blood vessels in my eyes. I am a full time student and work full time as well and the possibility of blindness in my future absolutely terrifies me. I am very interested in being a part of a clinical trial for stem cell transplants.
    thank you

  31. Julie wilson says:

    My husband who is 50 and my daughter who is 7 both have best disease she we just found out in January of this year would love to be a part a trial

    • EyeOnTheCure says:

      Best disease, also known as vitelliform macular dystrophy, is an inherited form of macular degeneration characterized by a loss of central vision. For more information on Best disease, please see the following link: http://www.blindness.org/best-disease

      You will be happy to know that the Foundation Fighting Blindness is currently funding research efforts at the University of Pennsylvania and University of Wisconsin to develop a gene therapy treatment for Best disease. Already, preliminary data has been published showing that gene therapy can stop disease progression in a dog model. Here is the link: http://www.blindness.org/foundation-news/progress-reported-gene-therapy-development-best-disease. If successful, these research studies will be moved under the jurisdiction of FFB’s Clinical Research Institute which is focused on the development of human clinical trials. There is however, a lot of work to be done before a trial can start. Toxicity and dosing studies in large animals, additional safety studies, generation of a GMP viral vector that can be used in humans and the filing of regulatory paperwork with the FDA are just a few of the things that need to be done before the trial can start. Thank you for your support that is enabling this research to advance into human clinical trials.

  32. Glenn says:

    Hi,
    I have RP, and have had it most of my life, I am in my 50’s now.
    I am looking forward to a therapy as are many, however, I have read some seemingly desperate comments regarding their sight loss, and I would like to address those.

    I have little better than light perception now and I am actively watching for a medical treatment for RP.
    Personally, I don’t feel that vision loss is so bad that I would risk my health to treat it. That is, if so-called “Embryonic” treatment was available, I would not feel that restoring my sight would be worth the cost of suppressing my immune system.
    I would just like for folks to know, that Blindness does not have to be a big deal, and that there are good alternative skills available, and I would encourage folks to contact the NFB at:
    http://www.nfb.org/
    which is a group that can connect you with a good place in your state for receiving training in alternative skills.

    The myth about Blindness is that it is limiting, as at this time, for the most part, all you cannot do as a Blind person is drive, but that may be changing soon with technology.
    But the reason I am reading peoples’ comments is that I am looking forward to a treatment too, but I know I don’t need sight to be happy, and productive, and be a person who gives more to the world than I take, and neither do others.

    • Anacita Sugalan says:

      Glenn I love the optimism in you. You are right. You don’t need to see to be happy. My sister has RP and she is 45. She is so terrified of completely losing her eyesight and I feel so bad for her. I will share your words of wisdom to her. Its nice to hear something positive out of the hopeless situation that you are in. Stay positive and God bless you.

  33. Jamie Hodge says:

    My father has glaucoma. Do these type of studies help with this sort of vision loss?

  34. Gulzar ahmed says:

    My uncle is suffer from rp.we are looking for trail.pls suggest us.we are from india.

  35. Phyllis Romine says:

    I was diagnosed with Polypoidal Chroidal Vasculopathy (PCV) about 6 years ago. I’ve had 6 surgeries, including scleral buckle, silicone oil in my eye and over 30 PDT Laser procedures. They have been unable to control the bleeding and I’m pretty much blind in my right eye. Would be very interested in being part of a trial.

    • EyeOnTheCure says:

      Dear Phyllis, Unfortunately, I am not aware of any human clinical trials for Polypoidal Chroidal Vasculopathy. The government website: http://WWW.CLINICALTRIALS.GOV lists all of the “legitimate” clinical trials taking place. You may want to check this site periodically to see if a trial becomes available.

  36. Balwinder says:

    My son just got diagnosed withretnitis pigmentosis. I want to know about best treatment abd cure. I will go to any extent for that……please help.

    • EyeOnTheCure says:

      Dear Balwinder, There are three general inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type your son has, you may want to ask your ophthalmologist as the information may be helpful in zeroing in on the causative disease gene. 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 also consider genetic testing for your son to 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, he may also qualify for one or more 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, one 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 http://WWW.FIGHTBLINDNESS.ORG website for new breakthroughs as well as http://WWW.CLINICALTRIALS.GOV website that 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. I hope you found this information helpful and thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  37. Kelly Wills says:

    I am 31 years old and the mother of four! I have been legally blind she I was 5 years old, however I was correctable with contacts until I was 19 years! I have myopic degeneration and my vision is progressively getting worse and I know I will eventually be blind. Please contact me with any trials that you are aware of – I recently read of a man who can now see after a trial in Florida.

    Sincerely,

    Kelly Wills

  38. Moises Garcia says:

    My son has been diagnosed with RP. He is 11 now and is starting to have trouble seeing at night. If there is any help to prevent any more vision lose or help I would greatly appreciate it. We have another son of 7 who may develop it later. It runs in my wife’s family. Thank you.

    • EyeOnTheCure says:

      Dear Moises, 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, your son may also qualify for gene therapy trials that are taking place. Information on genetic testing can be found in a PDF document at the following web link:
      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      Whether your son’s disease gene is identified or not, you should still 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.

    • Nancie Froning says:

      Hi I saw your post. I have RP I’m 60, my son is 25. Found out when he was. 11 years ol. There is hope in stem cell & gene therapy. Contact the Foundation Fighting Blindness they have all the information. Good luck.

  39. Jerry Walker says:

    I am 79 years old and both my eyes were verily damaged by a firecracker accident 67 years ago. Following a operation on my left eye about 25 years ago my vision in that eye improved for a time to as good as 20/40 but over time has now deteriorated to about 20/400 due to calcific band keratopathy. I know that this can possibly be corrected via chelation treatment or cornea transplant but my ophthalmologist strongly recommends against it because vision in the right eye is such that I can not even count fingers at any distance.
    I had a corneal transplant in the right eye about 15 years ago but it did not improve vision since the retina had been damaged. My desire, therefore, is to now find a treatment that will improve vision in the right eye sufficiently to compensate for any problem that might occur with a subsequent procedure for the
    calcific band keratopathy in the right eye.
    Any hope thatstem cell procedure can improve the vision in the right eye? Any trials available? I am currently treated by an outstanding doctor at eh U of Washington in St. Louis.

  40. Shamba John says:

    Since from the Childhood, i have been suffering from RP and i do not even know that weather my eyes will be like from others in the future or not. i am just 26 years old. i can wait to hear that treatment for such disease is developed…

    • EyeOnTheCure says:

      Dear John, 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.

  41. Pooja says:

    Hi,
    My name is Pooja and my brother-in-law is diagnosed with RP. He is a software developer and has lost 100% of his right eye sight. He is losing his right eye sight also. He was diagnosed with this problem something around 3 years ago. Is there any solution for this RP problem?

    • EyeOnTheCure says:

      Dear Pooja, Your brother in law 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, 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/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      He 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 in law 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.

  42. Becky Hanssen says:

    I have retina schisos in the right eye. Surgery has been done 6 years ago for a macular hole, detachment and then cataract. Best vision is 20/25 up to 20/100. My left eye suffered a severe 50% detachment in 2014. Six months after the detachment repair with a scholar buckle, I suffered another detachment in the remaining 20% of my retina. The first was treated with a gas bubble and buckle and the second with the oil. I still do not have good vision in the left eye pending a missing lens due to cataract surgery at the time of the 2nd detachment and swelling. I have lattice degeneration in the left eye. I’m 60 years old and in otherwise perfect health with no other problems or need for medication. I am hoping that some medical advance will help me keep my vision and restore my eyesight in the left eye. Thank you for listening and doing the research that will improve the quality of so many individuals and hopefully me who is facing birth defects.

    • EyeOnTheCure says:

      Dear Becky, As you already know, retinoschisis is a type of retinal disease that is caused by mutations in the retinoschisin (RS1) gene, located on the X chromosome. The RS1 protein is thought to act like a “cellular glue” that holds the retinal layers together. Normally, only males exhibit symptoms such as you have described. However, it is possible for women carriers, like you, to be affected. You will however be happy to know that the biotechnology company, Applied Genetic Technologies Corporation(AGTC) and the National Eye Institute have initiated human gene therapy clinical trials. For more information, please see the following link:
      http://www.blindness.org/foundation-news/agtc-recruiting-patients-study-x-linked-retinoschisis-gene-therapy

  43. RAJAT PRASHAR says:

    Sir any thing for vision worsening from fungi endopthalmitsis… my father is 53

  44. Ky says:

    HI my name is Ky, I am 18 yrs. old and I was born with my vision already impaired I have been wearing glasses since I was 2 yrs. old. Recently, my doctor has been finding holes in my retina and I have undergone laser surgery twice in both eyes. The last time I had surgery my doctor said my retina was very nearly detached in my left eye so blindness is very possible in my future. I was wondering if there is a cure for this?

  45. Barbara Seidita 330-542-9200 says:

    I had cataract surgery Mov.18,2016 & had good vision until the next day.then I went blind from a bacteria called psyfedamoumis. I had two processed done & 2 surgeries to save my eyesight and nothing helped . Dr.s did put silicone in to held save my eye. They said my retina is destroyed from the bacteria.my right eye also has a cataract on it & eventually will have to be removed . Hopefully I can put this off for awhile . I am interested in any hope you can help me to regain my vision & or a clinical trials. Please let me know if I should not put off having something done before it is to late . Thank You,Barbara Seidita

  46. ADETOLA ADEDOKUN says:

    Please my husband have glaucoma can he be part of your clinic trials thanks

  47. Glenn Garavuso says:

    Starting 12/24/2016 my vision started declining quickly. I immediately saw my ophthalmologist while I still had some vision left. He said we have to wait to see if it gets worse. Within a week I was totally blind in my left eye. I was diagnosed with central retinal vein occlusion and there appeared to be a clot in the central vein. I was given a shot of Lucentis and sent home to await the outcome. One month later I returned and the swelling and clot were gone but I still couldn’t see out of my left eye.
    Doctor said that most of my retina was damaged because of the clot and there was a strong chance that I would never see again out of my left eye. I’m very serious about participating in a clinical study where they are focusing on retinal regenerating through stem cell research. I can’t believe how fast I lost my vision and how there is NO cure for a central retinal occlusion with all the progress in medicine these days especially since the eyes are so need in every day life. Please advise me If there are any clinics I can participate in. Thank you.

    • Dr. Tim Schoen says:

      Central retinal vein occlusion (CRVO) is a blockage of the main vein in the retina. (Blockage of the small veins in the retina is called branch retinal vein occlusion, or BRVO.) The blockage causes the walls of the vein to leak blood and excess fluid into the retina. When this fluid collects in the macula (the area of the retina responsible for central vision), vision becomes blurry. Currently there are a large number of clinical trials on CRVO. For information on the trials, please see the following weblink:
      https://clinicaltrials.gov/ct2/results?term=central+retinal+vein+occlusion&recr=Open

  48. Hi
    I am 52 year old and facing the same right eye retinal degenerating issue. I am also interested to be part of the research.

    • Dr. Tim Schoen says:

      Dear Mansoora, 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.

  49. Shipra Cathrina says:

    Hi. I am from Bangladesh. My husband had lost vision in his right eye after 2 retinal surgeries in Australia in 1999. In 2004, he had faced similar problems in his left eye. After 6 surgeries in Chennai,India, he can see partially. He is an IT professional and loves to read. He is 57 now. I would really like to help him using Stem Cells to regenerate the retina in his right eye. I am amused by your article. It has brought a ray of hope for my husband. It is possible for us to visit USA. How may he get into the researchers program so that he can read and inspire others to be a great human being?.

  50. Bob Shreve says:

    I had a major retinal detachment and tear that did not reattach in the first surgery. So they cut away the retina where they had Lasered into place and attempted to reattach a second time. This surgery worked but I am missing my center vision only have a little peripheral vision. Can this surgery of retinal replacement give me center vision and would I be a good candidate for this type of surgery, I’m am 54 yrs old.

    • Dr. Tim Schoen says:

      Dear Bob, Unfortunately, I am not aware of any stem cell trials for retinal detachment at the present time.

  51. Natosha Gartner says:

    Please help! My daughter is 4 years old and we were told that she has RP. We will do ANYTHING to prevent her from losing her vision. PLEASE contact us as we have no idea what to do.

    • Dr. Tim Schoen says:

      Dear Natosha, You should consider genetic testing to try and identify the gene mutation responsible for causing your daughter’s RP. If the gene is identified, she may be able to qualify for current and/or future 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 daughter in FFB’s “My Retina Tracker”, a free registry that can help with the identification of new clinical trials. 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.

  52. Ed Crosby says:

    I am 67 years old and over the last four years I have endured multiple surgeries and procedures preformed on my right eye to repair a torn retina. My cornea became cloudy a year and half ago and my doctor replaced it. However the new cornea died and my doctor said another replacement would die as well. My pupil will not close and I can only see bright light and some colors but nothing else. Is it possible my damaged, sick eye can ever be healed and or repaired by stem cell therapy? Am I a candidate for stem cell research? Any feedback would be appreciated.

    • Dr. Tim Schoen says:

      Dear Ed, From your description, it seems that you have a number of different medical issues that are affecting your eyesight. I sincerely believe that it will be possible to restore lost functional vision one day. If you have lost a substantial number of photoreceptor cells and now at the light perception or hand motion level, you 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 blind 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/

  53. Peter says:

    hi I am Peter from Slovaka if u got any treatment for retina pigmentosa(in Slovak, or Czech Republic). Please tell me. thank You.

    • Dr. Tim Schoen says:

      Hi Peter, Regarding your interest in identifying a clinical trial for RP in the Czech Republic, unfortunately, I am not aware of any trials taking place there. Regardless, you should still 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 in the U.K. or U.S. 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.

  54. Susan says:

    My husband has retina degeneration that he has had since birth
    His right eye is totally blind.
    His left eye is 20/500 and getting worse.

    Is there any treatment that he would be eligible for9

    Thank you.

    • Dr. Tim Schoen says:

      Dear Susan, Your husband should consider genetic testing to try and identify the mutant gene responsible for causing his retinal 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 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 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.

  55. Judy says:

    Why doesn’t anyone discuss the topic of enviro-genetics (secondary-genetics, epigenetics, whatever…

    For example, in the book Invisible Disease by Nordstrom, a scientist who worked all the time on horrible computer screens developed detached retina. His doctors had criminally assured him his eye issues had nothing to do with computers, and believe it or not, he believed the doctors. After all, scientists are programmed to obey other scientists more than their own hunches re: their own bodies! (in fact, that’s how the elephants saved themselves from the tsnunami long ago. By listening to their bodies)

    Another example:
    My dad was farsighted & developed dry macular degeneration in his late 80s. Perhaps that’s because first of all, he worked alot at a vocation which involved checking colors against each other under a bright light, and secondly, due to farsightedness, he didn’t wear glasses in his youth (which protects vs. the elements), and thirdly, he never lived in a steady climate such as Florida where its always warm, thus protective of eyes. (Quite a number of Canadians develop MS or Meibomian Gland Dysfunction, and its cold there!) So why aren’t there any med.students testing out such types of theories for their thesis? Probably because nobody yet had such a hunch, or did they?

  56. Phillip says:

    Went blind 20/400 in right eye last week.
    CVRO.Doctors failed in providing standard of care, which should have been Hyperbaric oxygen chamber therapy within 24 hours of emergent symptoms. Fortunately I’ve another eye but its likely to occur there too. I’ll volunteer for clinical trials if you need someone in my condition. You have my email.

  57. Christopher Jaijairam says:

    I have CRVO in my right eye and am hoping for alternate treatment.

    Can you help me?.

    • EyeOnTheCure says:

      Hi Christopher,

      FFB does not fund research for CRVO. We are not knowledgeable about the condition. We recommend that you talk to a retinal specialist at a clinic associated with an academic research center.

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