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Foundation Fighting Blindness
7168 Columbia Gateway Drive, Suite 100
Columbia, MD 21046

E-mail: info@FightBlindness.org
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44 Responses to 'Contact'

  1. Stella says:

    As an American with family members who are challenged with the onset of age-related macular degeneration (AMD), I am very interested in this research and the upcoming clinical trials. I am living in Japan and would like to know more……….

    • EyeOnTheCure says:

      Stella,

      Thank you for your comment. We often share the latest in AMD news on our website and here on the blog.

      There are a few places on our website that will provide some useful information on AMD, starting with our backgrounder section on this eye condition: http://goo.gl/nJ04y

      We often report on new research advancements and so we encourage you to check out our AMD news articles section as well: http://goo.gl/zlCw2

      We hope you find this information helpful. Please let us know if there is anything else we can help you with.

  2. Trisha Dodson says:

    I have a 8 year old daughter with stargarts would love to know more about this and how I could get her to in this clinical trial thanks

    • EyeOnTheCure says:

      Trisha, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On http://www.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for Stargardt clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  3. Dr hassan says:

    i have my sister suffering from RP , kindly help her to save her vision….

  4. Verónica says:

    Hola tengo dos niños con retina pigmentosa quisiera saber. Más información sobre. La enfermedad ya q me angustio mucho por ellos. Gracias

  5. Pruitt says:

    My son Nicholas (17)honor student has stargarts. We would definetly welcome the copportunity for this remarkable young man to be cured and live a productive life. Please let me know what is available to help with this disease.

  6. I lost both of my periphal vision in both eyes and i was looking for a study center so i can get on a trial list i have rp looing for a clinic

  7. Jiyanne Castelly says:

    My brother has stargardt, a disease which causes you to lose your central vision.
    Currently his central vision is really bad so he has to rely on different method such his peripheral vision so he can see.
    Anyone has an idea on this? We are open to all suggestions/study centers.
    Please help.

  8. Jiyanne Castelly says:

    Hi,

    I wrote the message about Stargardt.
    I failed to mention that my brother is only 27 years old.

    Thanks

  9. Donna says:

    My 34 year old daughter was diagnosed last year with RP. She is a mom of 3 babies under the age of 5, and I pray that she will have her vision long enough to see her children graduate, get married and enjoy her grandbabies. I would love to be kept up to date with any information regarding research being done that may help her retain her vision

  10. Christopher misterka says:

    My name is chris, I am 24 and have suffered with axelfields rieggers syndrome causing advanced open angle glaucoma at 2, in alabama all they have seemed to do for the longest time was fill my eyes with tubes and shunts. Two in the left which have left it 85% degenerated and three in the right along with a catrax removal and lens implant that left my cornea destroyed and all other replacements fail me due to all that they have shoved in my eyes. I need any information this comment could god bless give me I’ve fought this battle too long to have to risk my only eye for seven years of sight. I pray someone knoladged and intuitive read this and reply.
    Christopher A Misterka
    Email:chrismisterka@gmail.com
    Phone: (256)694-9190. Thank you so much

  11. Stephanie says:

    My daughter Sammie is 11 months old and she has Jouberts and LCA. We have had the gentic blood works done and CEP290 was found in her. We are devasted and would love to be part of anything that will help her to see.
    Thank You!

  12. Laura Davalillo says:

    I’m a Mom of 3 and I have RP, my 2 oldest kids too. Please I would like to know what investigations are about this decease. I’m very worried for my kids. Please keep me informed about news about Retinitis Pigmentosa.

    • EyeOnTheCure says:

      I am sorry to hear of your family’s diagnosis with RP. 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. The fact that both you and your oldest kids have the disease indicates that it could be of the “dominant” Or the “X-linked” form. 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 and your affected children 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 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, 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/
      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. Aameneh says:

    Hello Dr Rose. I’m from Iran. I’m 22. I’ve LCA. is it curable now? help me really. my mobile is: +989128458961

  14. robin says:

    Well.. any news of the trail? i have rp since 11 year old. im now 55 yrs old.. since 2011.. i had problem with the stand print and now im only seeing like a fading pixs if u all know what i mean.. i have been very lucky.. i would love to be part of the rp stem cell…. plz let us know when.. thank u so much

    • EyeOnTheCure says:

      Please see my response to Dr. Bayan regarding stem cell treatments. 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
      If possible, 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 can be searched to identify any research that is being conducted. With a molecular diagnosis, you 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
      Whether the 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/
      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.

  15. brian says:

    I had a giant retinal tear in my left eye. 2 years and 4 surgeries it isn’t much better. Any suggestions? Clinical trial? stem cells?

  16. Tammy Phillips says:

    I am contacting in reference to my 17 year old son. He is the 6th member of my family plagued with RP. We have been working out of the Hamilton Eye Institute in Memphis, but the continuance of study there is bleak and we are grasping for straws on new research trials and just new hope. If you can help or guide us to new directions, We live in Tennessee and just can’t find any new help for him. Any guidance you can give would be so appreciated.
    Thank you.

    • EyeOnTheCure says:

      If you have not done so already, 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, 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.

  17. beatrice says:

    am just requesting if you can help my friend regain sight and where and in which hospital

  18. afshana says:

    my father , 72yrs, had retinal dtachment years back , he had progressive loss of vision .since 1yr he has no vision . he is hypertensive . can he see better with this device . 15yrs back he had surgery for RD

  19. BAL says:

    I see all these questions……Never answered by National Eye Institute. They should.

  20. Marsha Hollister says:

    I have 2 grandchildren, both with RP. They are my son’s and are 14 and 16. There is no other eye disease in the family.

    Do you have a catalog?

    • EyeOnTheCure says:

      Dear Marsha, Your son should consider genetic testing for your grandchildren 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, if the mutant gene is identified, they may qualify for one or more of the gene therapy clinical trials that are taking place. For more 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 grandchildren’s gene is identified or not, your son should enroll them in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. This could be of help lining them up for future clinical trials. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      You and your son 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.

  21. Louise Greene says:

    My husband henry has been having eye problems for 10 years. Two retina detachment ain each eye and two lens put in. Vetrectomy of right eye and cornea transplant or desect. His eye runs water daily.He can’t dee with his right eye. And the Left eye have several floater daily. He has to used a cane

  22. Scott Turner says:

    My fiance is 22 years old and suffering from suspected Devic’s Disease which has caused her to become partially sighted. So far we have hit a brick wall with doctor’s claiming that there is nothing else that can be done. Any help you may have would be great!

    • EyeOnTheCure says:

      Devic’s disease, also called neuromyelitis optica or NMO, is an immunological disorder that may be confused with multiple sclerosis (MS). Devic’s disease is often characterized by immune attacks on the optic nerves (which transmit what you see to your brain) and the spinal cord. Patients may experience these attacks at the same time or at different times. They may also have just problems with the optic nerves alone or just problems with the spinal cord alone and still have Devic’s disease. For more information on Devic’s disease, please see the following weblink: http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

  23. fakhradin says:

    hi please send email address shannon boy doctor to my emaill .I am fakhradin(father Avin)in Iran

  24. Merry anne go says:

    Greetings!

    I am Merry Anne S. Go, 39y/o. The patient Benito Go Jr., 44y/o, is my husband. We are currently residing in Manila, Philippines. My husband’s right eye is already NLP for three years now. And now his left eye can only perceive light. Aprox. 4 months ago (August 9, 2016) he had a vitreous hemorrhage that led to retinal detachment and needs to be operated immediately. Based on his lab tests like cbc, ultrasound-abdomen, liver tests, ecg, xray, all are normal. He is not diabetic, not hypertensive, no kidney problem, no urinary and disposal problem but he has periodontitis. He is a lacto-ovo vegetarian. Unfortunately his operation was postponed twice due to his prolonged PT and PTT. Further laboratory tests were made until recently it was found out that he has inhibitors on both PT and PTT that’s why he has factors 11 & 12 deficiency. Then we were referred by the hematologist to a rheumatologist. Further tests showed that he has antiphospholipid syndrome with moderately positive lupus anticoagulant and equivocal beta 2 glycoprotein. He was treated for a few weeks with medrol(steroids) and plaquenil and when his PT and PTT normalized , he was operated last Nov. 7, 2016. (Vitrectomy and with silicone oil and scleral buckle).

    But a week post surgery, the ophthalmologist said that there is still bleeding and my husband was still not able to see or read save the light for he doesnt have lens yet. so he was observed again for another week. And on his follow up checkup second week post surgery Nov. 22, 2016, his cornea was healed already and his eye is still red but not so red like his first wk. But i was surprised because he has hyphema grade 1. So his perceived light is lesser than before his surgery.

    We went again for a follwup checkup bec of his hyphema Nov. 24, 2016 for close monitoring and according to the doctor it seems that there is no additional blood (thanks God). And hoping that his eye or body can naturally absorb the blood.Followup last Nov. 28, 2016 and his hyphema increased to a grade 2 hyphema and IOP in the left eye is 52mmHg. He was scheduled for evacuation of hyphema the next day Nov. 29, 2016. After the procedure, we went for a followup checkup yesterday Dec. 1, 2016. And again grade 1 hyphema is present but with only 12 IOP. And he needs to wait for 5-6months with only a poor light perception bec the doctr cannot put the lens for the iris is very near the capsule, and the capsule is very opaque (opacity ), the doctor is hesitant to do further procedure for the silicone oil might leak to the anterior chamber and that will cause another problem.

    Can you help him regain his sight despite his condition now?
    Do you have any researches just like the case of my husband?

    I love my husband so much and by God’s grace i will do all i can to ask for help so that his only working eye can be saved.

    Hoping for your immediate reply.
    Thank you for your time and may God touch your hearts to help us. God bless.

    Respectfully yours,
    Merry Anne S. Go

  25. Sandra Ayala says:

    Hi,
    Our mother developed RP and is now blind.
    She is saddened by the fact that she no longer knows what her family members look like. If there is a way that our mother may be able to recover her vision, my sisters and I would be forever grateful if you can please provide us with that information. Are there any trials that she can be a part of to help her get her eyesight back or at least partially?
    Thank you.

    • Dr. Tim Schoen says:

      Dear Sandra, Individuals like your mother, who have lost a substantial number of photoreceptor cells and are now 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 blind patients with RP. For more information, please see the following weblink: http://www.retrosense.com/development.html
      Stem cells also 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/

  26. Krystyna Gasior says:

    My two sons are diagnosed with GA :gyrate atrophy of retina and choroid.
    Is anyone out there with the same diagnostic? Would love to know someone with the same problem.
    Desperate mother.

    • Dr. Tim Schoen says:

      Dear Krystyna, Gyrate atrophy is a degenerative disorder of the retina caused by high levels of the amino acid, ornithine, as a result of a defective enzyme that normally breaks it down. Exactly how and why the retina is damaged remains unknown. For more information on the disease, please see the following weblink: https://nei.nih.gov/faqs/congenital-gyrate-atrophy

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