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VISIONS 2015, Faces of VISIONS – Amy and Nathan Hayes

Amy and Nathan HayesOne of the wonderful things about the Foundation’s annual conference—taking place this year in FFB’s founding city of Baltimore—is it draws all kinds of people from around the world. And while they’ve come to gather research information and hear motivational speakers and meet others like themselves, each has his or her own story to tell.

In that spirit, I’ll try over the next few days to capture on video at least a few of this year’s VISIONS attendees answering a few basic questions.

First up are Amy and Nathan Hayes, FFB members from the Chicago area whose son, Nathan Jr., is a teenager with retinitis pigmentosa. I’ll let them tell the rest:

 

 


2 Responses to 'VISIONS 2015, Faces of VISIONS – Amy and Nathan Hayes'

  1. niloufar Yazdanbakhsh says:

    please help me to find cure for my eye problem which I RP and they constantly are telling me that I am going to be blind pretty soon. please help me to find a way to cure me.

    • 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 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 provides information on what the study is about, the requirements for participating and contact information.

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