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Foundation Fighting Blindness
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22 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:


      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:

      We often report on new research advancements and so we encourage you to check out our AMD news articles section as well:

      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 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, 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 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:


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


  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
    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:
      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:
      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:
      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

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