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searching possible prelight at the end of a ventions on the web. dismal tunnel, a hope ���We quickly put a team of someday ��nding together, Team Ty, for a cure for these cruel the Vision Walk 2011... diseases. Dr. Rose sugwe raised $2000 last gests those days aren���t year.��� Team Ty raised quite as far away as an additional $5000 for they might seem. The this past year���s Vision foundation���s research Walk. and testing over the The Mayberrys have past few decades has been longtime subled to over 45 children scribers to the Founwith RP and similar dation���s newsletter, In disorders having their Focus, and had been vision restored to difaware of the Vision ferent extents. It���s still Walks since their intoo early to cry out ception in 2006. Dr. cure, but these are Howard S. Lazarus, exciting times at the Medical Chair of the Foundation. Louisville Walk, perClinical trials for sonally invited the adults with retinal family to join the ��rst related disorders are Louisville Walk in ongoing, and Dr. Rose 2009, and they���ve been says more trials are alparticipants ever since. ways being prepared. Jessica Miller, a former ���Our search for director of the Louisa cure knows no ville Walk, encouraged bounds,��� Rose said of Lori to take an active the Foundation, which leadership role for the has raised over $500 5K���s local branch. Lori million in the name of currently sits on the ��nding preventions Louisville commitfor RP and other vitee and Samantha has sual diseases since its been asked to be the inception in 1971. ���To youth chair two years be blunt, our job is to in a row. go out of business so Ty Grif��n doesn���t recall his Retinitis pigmentosa bothering him before ���It���s a productive nobody has to hear the age of 16. way for her to advo���you���re going blind��� cate for herself,��� Lori ever again.��� said. But the push for a cure never seems quite fast enough for Ty was asked to be a Youth Co-Chair along with Saman- people like Ty and Samantha. tha this year after the adult Louisville Chairs saw one of There are four identi��ed types of Retinitis Pigmentosa the videos he had taken part in with other Henryville stu- Recessive, Dominant, Xlink and Sporadic ��� each one inherdents petitioning Lady Antebellum to come play a show at ited through family lines in some fashion, with the exceptheir prom after a tornado wreaked havoc in their town on tion of Sporadic RP that can inexplicably develop in young March 2, 2012. children without any family history of the disorder. Being Youth Co-Chairs has not only given Samantha Since the genetic deterioration inherent in each variant and Ty the ability to share their own stories, but it���s also of the disease can di��er so much from the next, only people granted them a platform from which to advocate for other whose RP is stimulated by the same genetic defects as the people living with degenerative retinal diseases. They���ve RP being studied in any given clinical trial can join in. Lori both made appearances at local venues to raise awareness says Samantha has been waiting a long time to get into a of Vision Walk and the foundation���s mission. trial, but so far her particular strand of RP hasn���t come up Samantha said participating in the Vision Walks has in the cards. But they���re still willing to wait. opened her eyes to just how many people share her and Meanwhile, neither young Hoosier is putting their life Ty���s unlikely condition. ���It���s brought me closer to people, on hold while the Foundation continues to make strides in to people like me. I���ve met a lot of people at the Vision the medical science community. Ty has been taking part in Walks.��� ���There was a whole world of people with my con- transition conferences for people learning how to live a regdition,��� Ty said, recalling his ��rst Vision Walk in 2011. ���It ular life while going blind, and he���s also been doing what helps them put a face on this���I love that I can help.��� // story continues on p. 41 At the core of the Vision Walks is the prospect of a bright silivingmag.com ��� 21