Introducing MDA’s Revamped Programs for Young Adults with Neuromuscular Diseases

Joe Akmakjian smiling for camera at graduation

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 new brand and mission and increasing emphasis on expanded young adult programming. Since then, we’ve created a peer-led initiative to create solutions that can empower young adults and help them reach their highest potential.

Thus, a new Young Adult Programs hub located at was born!

Today marks the first day these web pages are open to the community we serve. While it’s an exciting moment, these pages aren’t a be-all-end-all fix. They’re a step — or maybe a roll — in the right direction.

My good friend and MDA’s National Director of Young Adult and Community Engagement, Alex McArthur, chatted with me last week about this new platform and said, “I’m excited by MDA’s commitment to building out services and supports with young adults who have neuromuscular conditions. As a person with limb girdle muscular dystrophy, I know some of the challenges and opportunities that come with growing up with a neuromuscular condition. I’m thrilled to work together with young adults to create incredible programs that help to unleash the strengths and talents of our community.”

I also share in Alex’s excitement about this.

Now, I’m sure you’re wondering what the purpose of this new web hub is and how young adults with MD, SMA and related diseases can benefit from it.

First, the site has a full, new resources page that focuses on education, employment and independent living.

Additionally, the site gives you access to a young adult survey, a one-on-one mentorship opportunity and Strongly blogs specifically tailored to and written by our community. You can also sign up for opportunities and updates so you can be the first to know about forthcoming initiatives.

Here’s a little more information about each of these additional resources available now:

  • The survey: As we continue to enhance our young adult programming, we welcome any input on how we can better serve you. I encourage you to take five minutes to share information about yourself, including the types of activities you enjoy, challenges you face in pursuing your interests and goals, and ways MDA can provide support in education, employment and independent living. Do it all in our anonymous survey.
  • One-on-one meetings with Alex: Would you like some guidance as you consider decisions about college, careers, independent living and more? Alex has begun hosting customized one-on-one virtual conversations to support you in designing a life of meaning and enrichment. A free 30-minute session with her can help you identify your goals, barriers you may be facing and ways in which MDA can help support you in finding resources where you live. To schedule a session, email with three 30-minute options when you are available between 11 a.m. and 2 p.m. Eastern time on any weekday.
  • The blog: Some of the most popular content on appears on our Strongly blog. We want you to join the conversation! We’d love to have you submit your original blogs on a variety of topics for consideration as part of our Strongly series. Need some inspiration? We’re always looking to share tips on accessible travel, education, finding personal care attendants and adaptive clothing, dating and building relationships … the possibilities are endless! Email Alex at today to learn more about submitting a Strongly blog.
  • Sharing your voice with the world: Our community is full of strong voices that need to be heard, so I encourage you to consider joining our advocacy team. It’s easy to sign up to advocate with MDA and receive action alerts and updates on our public policy efforts. You can also share your time and talents as an MDA volunteer. This is a great way to develop important leadership skills while giving back to your community!

As we look to expand on these young adult programs and resources, we need your help and patience.

This won’t be an easy task, but we’re excited about the future and we hope you are, too. The best way you can help is by filling out our survey to share your ideas and needs with us. Eventually, we hope the young adult programs can include internship opportunities, expanded web resources, interactive educational opportunities and so much more.

We’re on our way.

Check out the new Young Adult Programs hub!