From a Child to an Adult: MDA's New Transitions Resource Center

Article Highlights:
  • MDA’s National Transitions Initiative seeks to empower teens and young adults with “pediatric” neuromuscular diseases who are making the transition to adulthood.
  • The latest transition tool is the MDA Transitions Resource Center, which provides a wealth of links to information on education, independent living, health care, careers, relationships and more.
  • Chris Rosa, a member of MDA’s Task Force on Public Awareness, asks members of the MDA family for feedback about priorities for the Transitions Initiative.
by Annie Kennedy on July 1, 2011 - 1:57pm

QUEST Vol. 18, No. 3

Thanks to improvements in diagnostic and clinical care, there’s a new population of people in the world: adults with “pediatric” muscle diseases.

MDA is committed to ensuring bright futures for all our children with neuromuscular diseases who will someday “transition” into adults with a different set of needs than they had as children.

That’s why we recently launched the MDA National Transitions Initiative, and why we have dedicated a special section of our website — the MDA Transitions Resource Center — to our community’s young adults. The online resource center covers college options and scholarships, independent living, health care, careers, relationships and much more.

In addition to the resource center, I’m excited to invite you to play a vital role in our National Transitions Initiative.

MDA is actively promoting federal policy aimed at expanding resources for our community and enhancing quality of life for adults with neuromuscular disease — and we need your help in creating our community’s “Policy To-Do List.”

To participate, visit MDA’s online Transitions Resource Center and:

  • complete a brief online survey about your experiences transitioning from a child with a neuromuscular disease to an adult with a neuromuscular disease; and
  • share your insights and tell your story via email or a video testimonial. What bumps in the road have you overcome? What programs have helped — or missed the mark? What do you wish you’d known that you know now?

(Note: If you do not have Internet access, contact your local MDA office for assistance.)

Together, let’s ensure that all members of our community will have a lifetime of happiness and opportunity.

Not convinced yet? Please read this message from Christopher Rosa, a member of MDA’s Task Force Committee and a highly successful adult living with the “pediatric” disease Becker muscular dystrophy.

Annie Kennedy
Annie Kennedy
MDA Senior Vice President — Advocacy
Christopher Rosa
Chris Rosa
MDA's National Task Force on Public Awarness

A special invitation

My name is Chris Rosa, and I’m truly excited to invite you to play a vital role in this important initiative being led by our MDA community — MDA’s National Transitions Initiative.

When I was first diagnosed with BMD 35 years ago, I’m not sure that anyone would have envisioned that someday I would be a 44-year-old man with a deep passion for the Mets and the music of Bruce Springsteen & the E Street Band, would earn a Ph.D., and would be serving as the University Dean for Student Affairs at the City University of New York.

But the path to my achievements has not always been easy. Like so many of us, I’ve had to overcome lots of obstacles along the way. And all too often, the resources that I needed to overcome those obstacles did not exist. For example, despite my academic and career success, no one ever told me that I should plan for my financial future. Like many of you, I don’t have a 401K — but it’s looking like I might need one.

Also, due to my daily physical care needs, living on my own is a difficult endeavor. Where are the federal and state resources to allow me to live independently and hire a paid caregiver? In my case, they don’t exist. Too many of my friends with neuromuscular diseases have graduated from college and graduate school, only to be unable to find full-time employment — or to get to work once they’ve found a job.

So, while life is good, it could be better. I know that as a unified community, we can reshape our futures.

That’s where MDA’s National Transitions Initiative comes in. MDA is taking a leadership role in identifying our resource gaps. Thanks to research and treatment advances, many of us are learning what gray hair and wrinkles are all about, and we need to be sure that we’ll have the resources we need to live to our greatest potential. But we need to hear from every member of our community — that means YOU.

Simply put: If you were the President of the United States, what would you do to make your daily life easier? Would you add funding for a personal care attendant to your medical insurance? Would you develop more housing options for people with physical disabilities? Would you change something about your workplace?

Please let us hear from you. After all, we are the ones who know all too well what challenges we face and what could make a real difference in our daily lives. Let’s join our voices so that together we can advocate for smarter policies, clear away some of the hurdles, and help each other by sharing what we have learned on our journeys.

See InfoQuest for scholarship and financial aid resources from the Transitions Resource Center.

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