MDA Advocacy Report

Young adults share wisdom via MDA's Transitions Center

Article Highlights:
  • MDA's Transitions Center offers a wealth of information — including resources, blogs and support on a variety of topics — for individuals who have grown up with neuromuscular diseases and are transitioning into adulthood.
  • Individuals also can participate in the Transition's Center interactive features, including the Accessible Spaces Gallery and the MDA Wiki Project.
by Annie Kennedy on April 9, 2012 - 12:00pm

QUEST Vol. 19, No. 2
Transitions Center
The MDA Transitions Center Accessible Spaces Gallery encourages you to share your story and photos illustrating a living area you’ve customized and made more "you friendly."

If you’re a regular reader of this column, you’ll know what I’m talking about when I refer to the MDA Transitions Center (TC). But if you’re new to this space, I’d like to encourage you to visit the Transitions Center website and see what a treasure chest of information can be found there.

The MDA TC is an interactive site dedicated to providing resources for individuals (roughly between the ages of 16-35) who have grown up with neuromuscular diseases and who are "transitioning" into adulthood. It also is a place where members of the MDA community can share their wisdom.

The TC offers links, blogs, and information and support on such topics as college planning, financial aid, getting a job, relationships and dating, living independently, volunteering with MDA and much more. The site is constantly evolving, with new features and information being added all the time — and we’re always looking for new bloggers.

Show off your space

One such feature is the Accessible Spaces Gallery. It encourages visitors to share how they’ve customized their living spaces to make them more user friendly.

Have you come up with an easier way to prepare meals in your kitchen? Or maybe you’re especially proud of the way you’ve set up your computer workstation in your office. The TC invites you to share your creative solutions to previously perplexing situations.

By clicking on "add a space" in the Accessible Spaces Gallery, you can enter detailed information about the area you’ve made more accessible. Share as many details about your renovation as possible — where the idea came from, how much it cost, obstacles you solved, and of course, how your new space has improved your daily living.

You also can easily submit digital photos or attach a video URL to help illustrate your finished project.

New this spring: Wiki up!

Another new way the MDA Transitions Center is helping young adults make their voices heard is through the MDA Wiki Project.

The Wiki Project provides a collaborative forum in which members of MDA’s community share their knowledge about a selected monthly topic. The end result is a resource created by people who have "been there, done that" that can serve as a guide for others in the MDA community.

To add to the existing wiki or to comment on items posted by fellow community members, simply log in and add your input. At the end of the month, the document will be finalized and added to the Resources page, and a new Wiki Project will be launched for the next month, on topics submitted by your fellow community members.

Be sure to check out the topic for March ("Top Things to Consider When You Move") and April ("Tips for Travel").

As I’ve always said, there’s great strength in our MDA community — and these two projects are perfect examples of the truth of that statement!

 

Talyah Bernardone

Talyah Bernardone, 20, is currently pursuing a degree in journalism from a university in Ohio. She shares some of the changes she made to her dorm room to make it more livable.

Diagnosed with congenital muscular dystrophy, the 20-year-old junior is ambulatory, but limited in her ability to climb stairs or to bend down to the floor.

Bernardone's Accessible Spaces entry features her electric reclining chair and power scooter.

Because of her physical limitation in reaching down low, many of the changes to her dorm room involve using open-front plastic bins as closet storage and hampers, raising things to an appropriate height for her usage.

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