I’m a 25-year-old college graduate. I’m an adult and I can prove it. I have bills, grown-up responsibilities and the obligation to do things I don’t want to do. Still, regardless of the date of birth listed on my Colorado State ID, some people still treat me like a kid. Unfortunately, a lot of the world finds it easy to infantilize people with disabilities.
Being chosen to speak in front of the FDA and represent the SMA community makes me feel incredibly honored. Today’s SMA Patient-Focused Drug Development (PFDD) meeting with the FDA means we have a voice as patients living with rare muscle diseases. The PFDD meeting was set up so that patients with SMA and the parents of children with SMA could stand before the FDA and voice their concerns, discuss their experiences with research and address the need for continued research that evolves to include more patients. This is my story.
National Ambassador Joe Akmakjian recently attended the 2017 MDA Scientific Conference. He writes, “I found the conference to be very hopeful and exciting experience. It was an honor to meet the people who have made a career out of saving my life and the lives of the other individuals and families. Everyone connected to MDA should be excited to know that these researchers are actively sharing ideas and discussing ways to solve problems and find the solutions we’re all looking for.”
When I was asked to continue in my role as National Ambassador for MDA in 2017, I had to think about it for about a nanosecond before I gave my answer. Yes, of course! So it’s official: I’ve re-upped for another tour. 2016 will be a hard act to follow, but now that I’m a registered frequent flyer and have a year of ambassadorship under my belt, I can’t wait to try to top it. In fact, I’ve taken the liberty of compiling a list of experiences I’m looking forward to in 2017. Join me, won’t you?
When opportunity knocks, 15-year-old Justin answers. Born with CMD, Justin has traveled to China, been on a 500-mile bike ride across Iowa, and even modeled in a fashion show. How? Justin always says, ‘Yes.’ That’s how he lives unlimited.
OK, friends. I’ve got some really great news. As you know, MDA’s commitment to improving the lives of young adults living with muscle-debilitating diseases is near to my heart. It’s why I chose to accept the role as the first adult MDA National Goodwill Ambassador. It’s been almost a year since we began implementing MDA’s . . .