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?
On Dec. 23, 2016 the FDA approved Spinraza for the treatment of SMA. In clinical trials to test Spinraza, participants who received treatment with the drug experienced life-changing outcomes they wouldn’t have been expected to achieve.
Strength, Science, and Stories of Inspiration (SSSI) and the Muscular Dystrophy Association (MDA) announced a new research funding mechanism for graduate students and postdoctoral trainees working in the muscle disease field.
Here’s how I see it: If families are at the heart of everything MDA does, then volunteers are the lifeblood that energizes our every heartbeat. Bob Bennett and Dr. Chris Rosa exemplify not only the best of our volunteers, but also the best of people.
For Ava Illingsowrth there are no barriers. There are no obstacles. For her, challenges are just opportunities to defy limits. Ava is a runner with the MDA’s Team Momentum, MDA’s endurance training team that helps people train for half or full marathons while supporting kids and adults living with muscular dystrophy. Ava herself is one . . .