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About

Eye on the Cure is the official blog of the Foundation Fighting Blindness, a private non-profit that raises funds for research targeting treatments and cures for vision-robbing retinal diseases. Authored by Dr. Stephen Rose, the Foundation’s chief research officer, and other contributors, the blog provides an insider view of the retinal research field, which, over the past decade, has exploded with scientific discoveries and advancements.

Steve, as he likes to be called, is a renowned expert on retinal research, which means Eye on the Cure provides readers with updates that no other blog can. Steve comments on the latest news, provides useful information in easy-to-understand language and connects readers with valuable resources, including those provided by the Foundation.

Founded in 1971, FFB has raised more than $500 million for research intended to eradicate retinal degenerations, such as retinitis pigmentosa and age-related macular degeneration, affecting more than 10 million Americans.

32 Responses to 'About'

  1. JENNA GRIFFITH says:

    MY NAME IS JENNA GRIFFITH AND I HAVE MACULAR DEGENERATION AND WOULD BE INTERESTED IN ANY INFORMATION THAT WOULD HELP ME, THANK YOU JENNA

  2. YOHANNES says:

    Hi I have RP my eyes gotton worse!!! How can I get treatment?
    Please help me give me some advice.
    Think you

  3. Lisa O Van says:

    I have FEVR and so does my six year old son. I’m always looking for more information on our disease. Or anything that can be done about it. I’d love to drive again…I’m hoping someday that is possible.

    • Eye on the Cure says:

      Hi Lisa,

      Unfortunately, we can only speak about research for retinal degenerative diseases that affect the retina in the eye. Your doctors and other eye specialists will be best suited to answer your questions about what treatments are available for your own condition.

      You may want to visit the website of the National Eye Institute (http://www.nei.nih.gov/) or reach out to someone at the institute – they may be able to point you in the correct direction on other resources or organizations who specialize in your condition.

      We wish you all the best as you try to find out more.

  4. Judee says:

    Hi,

    My family(from grandma(deceased) to 2 aunts, 3uncles(1deceased) and 2 cousins) has RP. We are from the Philippines, but, would be interested to know treatments on this.

    Thank you.

  5. Pollom says:

    Which is incredibly attention-grabbing, You are an exceedingly specialized blogger. We have signed up with your feast and also crunch pertaining to in the hunt for further of your great post. In addition, We’ve discussed your web blog during my social support systems

  6. George Msovela Pangawe says:

    My name is George Msovela Pangawe a male of 51 years old and i have macular degeneration (severe problem) and I’m interested in any information that could help to cure my problem because as the days going on I’m loosing my sight vision. Thank you in advance.

    • EyeOnTheCure says:

      Thank you for your comment George. 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.

  7. i have a friend that is in need of answers or a doctor that can help him he has stargardts eye disease or was told that im tring to help him he can see alittle but it dont look great he needs my help and yours thanks so much and have a blessed day

  8. MICHELE BALLAN says:

    I HAVE BEEN DIAGONSED WITH RETINITIS PIGMENTOSIA.. I AM 72 YEARS OLSD IT STARTED 10 YEARS AGO AND IS BECOMING PROGEIVELY WORSE.. I HAVE 8 GRANDCHILDRE MY OLDEST GRANDDAUGHTER WHO ATTENDS BARNARD UNIVERSITY IS LOSING HER EYE SIGHT IF U CAN SEND ME INFORMATION ON ALL CURES OR HELP I WOULD BE VERY GRATEFUL.. IF YOU W CAN PLEASE SEND IT TO HER AS WELL. HER NAME IS NAOMI R. MARNE HER E MAIL IS NAOMI@MARNE.COM

    • EyeOnTheCure says:

      You and your granddaughter may want to consider trying to identify your disease gene as there are already several clinical trials for RP that require a molecular (genetic) diagnosis to participate. Currently over 50 genes have been shown to be involved in RP. 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 may also want to consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

  9. Sharon Wagner says:

    I am 74 years old. I have had retinitis pigmentosa for 10 years. My vision, reading and colors are progressively getting worse. I am very much interested in any research information you can give me. I am particularly interested in stem cell therapy. I would be very grateful for your help in this matter. Thank you.

  10. anjana linton says:

    I have a daughter with RP. I would like to know, if there is any thing being done to restore visoin!
    Please inform us if there is anything worthwhile going on so we can provide her with that help.
    thanks
    anjana

    • EyeOnTheCure says:

      There are three main types of RP: recessive, dominant and X-linked. If you are not sure which type your daughter has, you should ask her 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 may also want to try to identify your daughter’s disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what research is being done. Your daughter may also be able to 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 you identify your daughter’s disease gene or not, you should consider entering her information in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. 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.

  11. Chandra says:

    My name is Chandra a male of 29 years old. I have retinitis pigmentosa. I am very much interested in any research information you can give me. I am particularly interested in stem cell therapy. I would be very grateful for your help in this matter. My email is nwwmailtp@gmail.com. Thank You.

  12. Tom says:

    I was diagnosed with Serpiginous Choroiditis in 2008. I was treated with corticosteroids but saw no improvement. I also tried immuno-suppressants but the disease got worse and I abandoned the treatment after 3-4 months. For the past 5 years, I have been receiving Avastin / Lucentis injections every 4-6 weeks to keep the swelling to a minimum and to keep a neo-vascularization at bay. However, over time, my eyesight has slowly but progressively deteriorated.

    In searching for solutions, I noticed a seasonality to the disease. It was much more active in the Spring and Fall. Through some retina specialists at Bascom Palmer and Cleveland Clinic, I heard that other patients with serpiginous also noticed this seasonality. Last fall, I learned that I was allergic to dust mites and have tried to drastically lower my exposure to dust mites. In doing so, the progress of the disease seems to have stopped. Is there any research connecting allergies to uveitis? Or is this just a lull in the progress of the disease?

    Thanks for the help.

  13. angie martinez says:

    Hi,

    Iam from Corpus Christi Texas & have two boys that were diagnosed with Lebers Hereditary Optic Neuropathy,ages 17 & 22. Iam very much interested,would this work for my boys that are visually impaired with very poor vision.

    Please send me an email, with some info.

    Thank You,
    Angie Martinez

  14. Felicitas says:

    Hello,
    I am contacting you with regards to my 4 year old daughter. She has very low vision and a Nystagmus. Recently, a mutation of CNGA3 has been confirmed as the cause of her visual problems. Due to the fact that she is able to see colors and is not yet light sensitive the diagnosis given to us was oligocone trichomacy. Now I am interested in any research and clinical trials looking into gene therapy for this specific gene. What are the right reserach groups and KOLs to contact?
    thank you very much for your support which is much appreciated.
    Felicitas

  15. Linda w says:

    I have Stargardts disease. My right eye is totally affected now. The right eye is still holding stable but could change at any time. PLEASE. Is there any trial studies that I could apply for.

    • EyeOnTheCure says:

      You will be pleased to know that the Foundation Fighting Blindness is partnering with Sanofi Pharmaceuticals on a gene therapy clinical trial for Stargardt disease. For more information on this trial, see the following link:
      http://clinicaltrials.gov/ct2/show/NCT01367444?term=stargardt&recr=Open&no_unk=Y&rank=2 In order to participate in this or any other gene therapy trial, you must first obtain a molecular (genetic) diagnosis. 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 in “My Retina Tracker”, a free registry that helps link people with retinal disease to appropriate clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/

      Of general interest, there is a “Stargardt – Macular Degeneration” Facebook page where people can communicate with other people affected by Stargardt disease. Here is the link: https://www.facebook.com/groups/Stargardts/

      Finally, below is a list of pharmaceutical companies that are developing therapies for Stargardt Disease:

      Acucela,( http://www.acucela.com/) is a Seattle-based biotechnology company that is developing several drugs for retinal diseases such as AMD, dry eye, diabetic retinopathy, retinopathy of prematurity and Stargardt disease. Acucela’s visual cycle modulators (VCM) reduce the activity of the rod visual system — in essence, “slowing it down” and reducing the metabolic load on the retina. Reducing the speed of the visual cycle has been shown to protect the retina from light damage and reduce the accumulation of retinal-related toxic by-products, including A2E, which is implicated in both Stargardt disease and dry AMD. The Company’s lead investigational compound (Emixustat™) is currently in Phase 3 trials for dry AMD. Once approved by the FDA, Emixustat could be prescribed for Stargardt disease.

      Ocata Therapeutics (https://www.ocata.com/), a Santa Monica-based biotechnology company, has developed an RPE cell line that is derived from embryonic stem cells (ESC). Studies have shown that the subretinal transplantation of ESC-RPE cells in a rat RP model resulted in 100% visual function rescue. Functional rescue was also achieved in the Stargardt mouse model with near-normal functional measurements recorded at more than 70 days. The RPE cell transplantation studies are now in Phase 2 human clinicals. Here is the link to the Clinical Trials.Gov recruitment web page: http://www.clinicaltrials.gov/ct2/show/NCT01469832?term=advanced+cell+technology&rank=2
      *Note: It is not known how long the transplanted RPE cells will last in a human patient with Stargardt disease. Unless gene or pharmaceutical-based augmentation treatment is coupled to the RPE transplant, toxic A2E will continue to be produced and eventually kill the RPE cells.

      Alkeus, (http://alkeus.com/) Alkeus has developed a form of vitamin A that upon light interaction, does not form toxic vitamin A metabolites and A2E. Alkeus’ lead compound, ALK-001, is an oral compound with a well-understood mechanism of action. ALK-001 was specifically designed to treat Stargardt disease by preventing the formation of these toxic vitamin A dimers in the eye. Alkeus is currently recruiting patients for a Phase 2 human clinical trial. Here is the link to the clinical trials.gov recruitment page: https://www.clinicaltrials.gov/ct2/show/NCT02402660

      Vision Medicine (Previously Visum) The Foundation Fighting Blindness is partnering with Vision Medicine to develop a small molecule therapy Stargardt disease. Vision Medicine’s novel approach proposes to develop drugs that will temporarily control levels of A2E in the eye and preserve the natural vision cycle, leading to a therapeutic treatment. Vision Medicine has discovered a unique chemical approach to sequester rather than eliminate A2E. Through this process, 25 diverse FDA approved drugs demonstrating both mechanistic and in vivo efficacy have been identified. Vision Medicine has identified a lead compound, VM 200, which is an enantiomer of an FDA approved drug that demonstrates complete retinal protection in preclinical studies. Vision Medicine plans to conduct Phase I and Phase II clinical trials in the near future.

      To read more about the partnership between Vision Medicine and FFB, see the following web link:
      http://www.blindness.org/foundation-news/foundation-fighting-blindness-partners-vision-medicines-develop-stargardt-disease

      I hope you find this information helpful and thank you for your support that is enabling the development of new treatments for degenerative retinal disease.

  16. Arzu says:

    Hi, my name is arzu, I want to study and research for blindness and its cure ways, but I dont know how stars it, I m studying chemistry

  17. Shin Jin Woo says:

    I am Jin Woo from Korea
    This e-mail due to my 1st son who is color blinded (red & green)
    In Korea, the most problem is that Korean society do not give job and major opprotunity to color blindness about various field.
    I can agree and accept that some of major and job need exact colors but color blindness must be disadvantage in selecting major & job which don’t need color in Korea.
    For me, the most painful is that my son cannot see beautiful sunshine and nature with same color as I do

    I heard color blindness may be cured by gene therapy recently So, I want to know about below.
    1. When will trial treatment do for human color blindness?
    2. I heard these treatment need approval some of association for example, FDA
    Is there possiblity in getting approval from those association for human use soon?
    3. I really would like to know how long it aproximately take until commercialization in the world after approval.

    And color blinded people hide their vision deficiency

    All parenents who has color blinded children have had hard time and sickness at heart due to this situation

  18. Noha Yousrey says:

    Dear sir,

    i want to know there are stemp cells treatment the optic nerve because my mom suffering aglucoma … please answer me any way

    thanks in advance

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