Honoring our Duchenne families and community today on #WorldDuchenneDay with a a new C-Path Impact Story.
Duchenne Regulatory Science Consortium members Ryan Russell PhD and Colin Werth are two busy guys. In addition to their roles with D-RSC, both are part of the Adult Advisory Committee with Parent Project Muscular Dystrophy, where Colin also serves as President of the Committee, while Ryan also works with Patients Rising Now as a Senator, is Founder of Life On Positivity, and Ambassador of the Jett Foundation. They both lead busy careers, Colin in IT, Ryan as a Life Coach with a Ph.D. in psychology, and just for good measure, Ryan recently decided to take up skiing and eagerly awaits the lift to the top of the mountain this winter.
“There aren’t very many of us over 40, so mostly I try to mentor the younger generation,” Russell explained. “The best thing that happened to me in advocacy wasn’t talking to the Senators or a member of Congress. There were two mothers at an event, whose children were recently diagnosed with Duchenne. When they heard that I was 40 years old, they broke down in tears. They had no idea that their child could live that long, or that they could do all the things that I can, like skiing and kayaking. The things I do speak volumes, more than what I say. The biggest thing I think they see is, “ok that’s possible.” I try to help them see that their dreams still can come true.”
“I try to get the pharmaceutical industry to be more interactive with the community and realize the importance of hearing the voice of patient advocates,” Werth explained. “It’s very important for pharma to receive feedback, to ensure they’re designing the best possible clinical trials and to get better treatments approved. Because if they’re not listening and getting feedback, they’re not going to get drugs that succeed.”
Full story: https://lnkd.in/g2S98y56
#CPath #DMD #Duchenne #raredisease #DRSC #collaboration #globalhealth #datasharing #drugdevelopment
Chief Executive Officer at USA and International Research Inc.
1moCelebrating the inspiring dads at Daiichi Sankyo who inspire both at work and at home! #FathersDay #DSProud