MDA Matters Winter 2010

Article Highlights:
  • myMuscleTeam is a new MDA-sponsored online care coordination service that provides practical assistance to individuals and their caregivers.
  • Be sure to get an H1N1 flu shot — but not the nasal spray vaccine, which can be dangerous for those with neuromuscular diseases.
  • National Goodwill Ambassador Abbey Umali speaks at an IAFF symposium in Los Angeles.
  • MDA's equipment loan program provides gently used durable medical equipment at no charge. Equipment donations are gratefully accepted!
  • The redesigned Quest magazine online site provides access to myMDA message board discussions on related topics.
by Quest Staff on December 31, 2009 - 1:02am

QUEST Vol. 17, No. 1

Featured in this article: Coordinate your helpers with myMuscleTeam ** H1N1: No to the nose vaccine ** Ambassador Abbey is on a roll ** MDA equipment loan program makes a difference ** myMDA and Quest

Coordinate your helpers with myMuscleTeam

Asking for help isn’t easy and sometimes can seem like more trouble than it’s worth.  To make this task easier and more efficient, in December MDA launched a new online care coordination service, myMuscleTeam, which provides Web-based support for people with muscle diseases and their caregivers. The free, easy-to-use site powered by Lotsa Helping Hands enables the creation of personal Web sites with these features:

Update family and friends. By posting photos and journal updates, myMuscleTeam users can stay connected with a limitless number of friends and family. The feature automatically notifies friends and family each time an update is posted.

Coordinate volunteers. The site also provides a special calendar where you can request help, such as transportation to medical appointments, shopping, assistance with meals, household chores, etc. Family, friends, co-workers and other potential helpers can then volunteer by signing up for specific tasks.

Reminder emails are automatically sent to each volunteer prior to his or her scheduled service. Privacy and security settings allow restricted access to journal updates and the care coordination calendar.

To utilize myMuscleTeam, go to or visit MDA’s homepage and click on the myMuscleTeam link on the top of the page.

H1N1: No to the nose vaccine

Because the flu can be deadly for people with weakened breathing muscles, MDA has been keeping tabs on this season’s influenza situation. Through February, MDA and Walgreens have teamed up to offer free seasonal flu shots to people registered with the Association.

Of special concern this year is the H1N1 (swine) flu. MDA has created a special H1N1 resource center on its Web site — — to provide updates on this more virulent form of the illness. MDA advises that no one with a neuromuscular disease get the nasal spray form of H1N1 vaccine because it actually contains a weakened form of the H1N1 virus.

Supplies of the vaccine administered by injection have been slow in arriving throughout the country, but as they become available, priority will be accorded to at-risk groups, such as people with neuromuscular diseases and their caregivers. MDA is working closely with the U.S. Centers for Disease Control and Prevention on how best to get the injected form of the vaccine to members of the MDA community.

Call your local MDA office at (800) 572-1717 for information on obtaining either the seasonal or H1N1 flu shot.

Ambassador Abbey is on a roll

MDA National Goodwill Ambassador Abbey Umali shares the stage with MDA Telethon co-host Jann Carl and IAFF General President Harold Schaitberger. Both Carl and Schaitberger are also MDA volunteer national vice presidents.

As 2009 drew to a close, MDA National Goodwill Ambassador Abbey Umali participated in a biannual occupational health and safety symposium conducted in Los Angeles by the International Association of Fire Fighters (IAFF).

Appearing onstage with MDA National Vice President and Telethon co-host Jann Carl, Abbey presented IAFF General President Harold Schaitberger with a piece of art she created especially for him. The IAFF is MDA’s largest national sponsor. Later, Abbey, 10, and her parents, Wendi and Joel, had a brief respite at home in Redlands, Calif., before spending two very busy days at MDA headquarters in Tucson videotaping updates to MDA public service announcements and fundraising campaign materials.

MDA equipment loan program makes a difference

MDA’s national equipment loan program distributes gently used durable medical equipment — hospital beds, walkers, wheelchairs, ramps, communications devices and more — to individuals with muscle diseases who are registered with MDA and have a prescription for the device from an MDA clinic doctor.

In 2008, the program gave out more than 6,200 pieces of equipment, an increase of 15 percent over 2007.

When the equipment is no longer needed, families are encouraged to return it to MDA for use by others.

Through its local field offices, MDA also gratefully accepts donations from the general public of durable medical equipment that’s in good shape or requires only minor repairs.

Besides MDA’s equipment loan program, many federal, state and local resources exist to assist individuals with equipment purchases. Local MDA offices maintain an extensive database of resources available in your area. Contact your local MDA office at (800) 572-1717 to be connected with knowledgeable staff who can help you navigate the equipment purchase process.

Quest and myMDA

Check out the feature on the Quest home page called “Search Content by Disease.” When you click on a disease name, you not only see Quest articles about the disease, but also message board discussions on the e-community myMDA.

For example, clicking on “Becker muscular dystrophy” brings up Quest articles such as “Building a Better Gene” and “Still Fishing.” It also brings up myMDA discussions such as “age 9 with BMD, anyone in a chair or having difficulties walking already?” and “my 5-year-old is sore after sports.”

By clicking on a discussion link, readers are connected with the collective wisdom and support of MDA’s online community. Readers do not need to be registered with myMDA to read the message board posts but must register (free) in order to post their own replies.

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