Rachel Weeks, who has Usher syndrome – a disease affecting both vision and hearing – is a dedicated triathlete. With guidance from her sister, Rebecca, she runs, swims and bikes her way through triathlons with only a 10-degree field of vision and 30 percent of her hearing. But once, as she prepared to plunge into the water with hundreds of competitors, a woman insisted on congratulating her for her efforts. At that particular moment, it served as a disorienting reminder of the challenges she faces.
So, as Rachel began her swim, “I had to dive so deep down mentally to kind of wipe all of that away,” she recalls. “I had to forget what I can’t do and just focus on the physical part.” Which Rachel did, finishing yet another Race to Cure Blindness event that helped her raise funds for FFB.
Rachel’s is one of more than 100 “stories of hope” posted on FFB’s website over the past few years. “Hope” because each is proof that a retinal disease does not end a life; in fact, it may motivate a person in ways those with sight can hardly imagine. But these stories also remind us that vision should never be taken for granted, and that the Foundation’s work inspires our subjects as much as they inspire FFB.
Below are links to six recent stories from our collection, a sampling which illustrates the diverse backgrounds and talents of individuals affected by diseases like retinitis pigmentosa, Stargardt disease and, of course, Usher syndrome:
|“Not To Be Denied” – Struggling in school because of Stargardt disease, Dale Pollak went from being a kid without much of a future to an ultra-successful businessman.|
|“Weathering The Storm” – Told, in his teens, that he had retinitis pigmentosa, Damien DelRusso turned to piano tuning to make a living. He ended up cultivating a career in music.|
|“The View From The Top” – Although legally blind from birth, Erik Weihenmayer found a way to satisfy his inner athlete – by climbing mountains. He has since scaled the Seven Summits, including Mt. Everest.|
|“All In The Family” – Her brother, Andy, was diagnosed with retinitis pigmentosa during the “dark” days, when patients were told there’s no hope. In her memoir, Susan Meyers writes of the challenges many affected families face.|
|“Humor Us” – He went to Hollywood to become an actor and discovered along the way that he has retinitis pigmentosa. Now a regular on CSI, Jon Wellner leavens his vision loss with humor.|
|“No Slowing Down” – She may have lost much of her vision and hearing to Usher syndrome, but, as a triathlete, Rachel Weeks doesn’t let those deficits stop her.|