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VisionWalk 2012: Federal Way family battles retinal disease
Organizers of the VisionWalk 5K, slated for Oct. 20 in Seattle, hope to raise $50,000 to continue the fight against retinal diseases of all kinds — many of which can ultimately lead to blindness for those affected.
Some of those diseases include retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and Stargardt disease.
One of the organizers of VisionWalk, Federal Way resident Mike Hoag, personally has a lot invested in trying to find a cure for the aforementioned diseases, particularly RP.
Both of Hoag’s sons, Matt and James, have been diagnosed with the disease.
“It is heart-wrenching to watch my sons’ visions slip away to retinal disease,” said Hoag, who is co-chair for the VisionWalk event. “I struggle to do something meaningful to help them. My part is to help raise money and raise awareness to ensure that the research keeps moving forward.”
RP is “a group of genetic eye conditions that leads to incurable blindness,” according to Wikipedia. RP starts with night blindness and then progresses to tunnel vision. Some RP patients do not go legally blind until their 40s or 50s, and retain some sight all their lives. Others go completely blind from RP, in some cases as early as childhood.
RP attacks the photoreceptors in the eye, the rods and cones, by causing abnormalities in those structures.
Matt Hoag, 31, who now lives in Spokane with his wife, Cara, and is an assistant professor at Gonzaga University, described his experiences with RP and how it has changed his life.
“I was a Federal Way High School student, and I can remember, even walking the hallways at school, that I felt kind of awkward. I felt very clumsy,” he said. “I would bump into trash cans that were in the hallways, especially when the hallways were more crowded between classes. That kind of thing.”
Hoag said the formal diagnosis of RP didn’t come until much later after he had graduated from Gonzaga.
“I went to an eye doctor, and had mentioned it to him. He saw, in my examination, just some physical finds…for folks that have this condition. He suggested I go see a retina specialist to get further treatment and do a side-vision test,” Hoag said. “(A side-vision test) is where you look into this big, glowing orb, essentially, which would comprise your normal field of vision, that’s about 90 degrees, and they flash these lights in varying spaces around your peripheral vision, and you’re supposed to hit a button when you see it.”
The results of that test confirmed what Hoag had suspected all along. At that time, his peripheral vision was around 20-25 degrees, he said, which is right at the limit for “legal” blindness. Another, more recent test confirmed that the disease had progressed, and has left Hoag’s peripheral vision field at 5-10 degrees, making him legally blind.
Hoag said the biggest adjustment for him had been learning to adjust his life around the fact that he can no longer drive a vehicle. In his case, however, Hoag said he had begun adjusting his life with the initial diagnosis a number of years ago, so the loss of being able to drive was not as shocking as it could have been.
Outside of losing his ability to drive, Hoag did touch on the idea that he feels the disease can create a sense of isolation in those affected.
“By its nature, the way it works… it’s almost separating you from the world around you, because in losing your vision, that’s a big way you interact and connect with the world around you,” he said.
For Hoag, that isolation is lessened because of the fact that younger brother James has also been diagnosed with RP.
“It certainly has brought us closer together. Even though we may not talk about it, it’s one of those things that goes unspoken. We know that the support, the understanding, and ultimately, the care and concern for one another is there,” he said.
Decreasing that sense of isolation is also combatted by participating in events like VisionWalk, Hoag said.
“It’s a great opportunity to get together, and just experience the support we have within our network and the bigger network of our friends,” he said. “To me, the most important aspect of it is to come together as a community for folks that have a vision condition. To get together and really just form those bonds and connections.”
“On the whole, on the balance, I feel very positive about my outlook for life and my friends, family, and the network of love and support they provide, is a big reason for that. And VisionWalk is a great way to plug into that for me,” he added.
Hoag also said events like VisionWalk are important because of the vital funds they raise for medical and technological research. One only has to look at stories like Google’s prototype program for automated cars, Hoag said, to realize that a condition like RP, especially in this day and age, is not the end of the world.
“Technology and research are making the world more accessible and giving more and more hope to ultimately restoring vision to folks like me that have retinitis pigmentosa,” he said.
The second annual VisionWalk 5k, which raises funds for research for retinal diseases, will take place Oct. 20 at Seattle’s Magnuson Park (7400 Sand Point Way NE, Seattle, 98115). Registration starts at 9 a.m., and the walk will begin at 10:15 a.m.
To learn more about the VisionWalk 5k event, visit www.visionwalk.org.