I’m an Adult. Talk to Me Like One.

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.

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MDA Cohosts and Sends Representatives to SMA Patient Focused Drug Development Meeting with FDA


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.

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Of Mice and Scientists: Joe Akmakjian Reports from the 2017 MDA Scientific Conference

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.”

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