Let's give Bryan a chance to "see" our future
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Retinitis Pigmentosa (RP) is a set of genetically inherited syndromes that is the leading cause of inherited blindness. There are around 60 known variations of RP and it is estimated that 1 out of every 4,000 people worldwide are currently affected – and Bryan is one of them. He doesn’t like to talk about it, he doesn’t like to ask for help, and he doesn’t like charity… so I’m going against it all – FOR HIM. I watch the struggles and disappointments he pushes through day after day. I know this disease has made him stronger, but it is still difficult to see someone you love have to endure so much. Bryan once told me that he wanted to be a college professor and wished he could learn to fly a plane, but his eyesight would prohibit him from ever fulfilling those dreams. It is utterly heartbreaking to hear your loved one get so discouraged and give up on his dreams; you feel helpless…
There may finally be a light at the end of the tunnel, an outlook that isn’t so dark, a way to prolong his eyesight – the FDA has approved a gene therapy called LUXTURNA. A treatment for one of the genetic mutations that causes a very specific form of RP. This new treatment is not for Bryan’s type of RP, but it is one step closer – which gives us hope. At least it did until Bryan saw the price tag. He is cautiously hopeful but is also fearful that the monetary hurdle will be too high to overcome. But, if the end result means he could potentially be a college professor, co-pilot a plane, see his daughter in her wedding dress, or the smile of his first grandchild – you have to try, right??
Bryan is such an amazing person and wants nothing more than to support his family and friends – help anyone and everyone he can. Now I want to do everything I can to find a way to support him. RP may be taking his eyesight, but I know he will never lose his “vision”. I hope, with all my heart, to one day be able to give him this sight-restoration so he can follow his vision and fulfill his dreams.
“Vision is the art of seeing things invisible” – Jonathan Swift
There may finally be a light at the end of the tunnel, an outlook that isn’t so dark, a way to prolong his eyesight – the FDA has approved a gene therapy called LUXTURNA. A treatment for one of the genetic mutations that causes a very specific form of RP. This new treatment is not for Bryan’s type of RP, but it is one step closer – which gives us hope. At least it did until Bryan saw the price tag. He is cautiously hopeful but is also fearful that the monetary hurdle will be too high to overcome. But, if the end result means he could potentially be a college professor, co-pilot a plane, see his daughter in her wedding dress, or the smile of his first grandchild – you have to try, right??
Bryan is such an amazing person and wants nothing more than to support his family and friends – help anyone and everyone he can. Now I want to do everything I can to find a way to support him. RP may be taking his eyesight, but I know he will never lose his “vision”. I hope, with all my heart, to one day be able to give him this sight-restoration so he can follow his vision and fulfill his dreams.
“Vision is the art of seeing things invisible” – Jonathan Swift
Organizer
Carissa Sutphin
Organizer
Barberton, OH
