Category: Young Adults

Young Adults, Living with Muscular Dystrophy, Advocacy

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

Hugo Trevino
PFDD

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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Young Adults, MDA Ambassadors, Research

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

Joe Akmakjian

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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Young Adults, MDA Ambassadors, News

Oh, Hello 2017 — I’m Ready for You

Joe Akmakjian

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?

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Young Adults

Meet the MDA Resource Specialist: Hugo

MDA Admin

Since the tender ago of five, Hugo Trevino, who has Spinal Muscular Atrophy (SMA), has been involved with MDA. From participating in MDA Summer Camp as a child to rallying behind causes like Fill the Boot and Muscle Walk, Hugo has always been dedicated to helping others live longer and grow stronger. Now, as a . . .

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Kids, Young Adults

13-Year-Old Author with CMT Made International Headlines with her Petition to American Girl. Now She’s Written a New Book with a Heroine She Can Relate To.

Erinn Unger

13-year-old Melissa Shang is an activist, an advocate and an author. She’s spoken at the United Nations, given a TedX talk and just published her first book. She is a girl on a mission. And it all started with an American Girl doll named Isabelle. For Melissa, Isabelle was the last straw. Every year, American . . .

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