MDA Matters Fall 2009

by Quest Staff on October 1, 2009 - 1:41pm

QUEST Vol. 16, No. 4

Featured in this article: New book on Mattie coming soon ** National Goodwill Ambassador Abbey Umali's Read-a-Thon ** Former National Goodwill Ambassador Ben Cumbo heads back to school ** MDA Task Force adds new member ** MDA equipment loan program sets record in 2008 ** MDA adds profiles on Twitter ** MDA and Walgreens fight the flu.

New book about Mattie coming soon

Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs, a book about the poet, peacemaker and former MDA National Goodwill Ambassador written by his mother, Jeni Stepanek, will be released Nov. 3 by Dutton.

Mattie, who served as national goodwill ambassador from 2002-2004, died in 2004 at age 13, from complications of dysautonomic mitochondrial myopathy. Jeni has the adult onset form of the disease.

In his short life, Mattie published six Heartsongs books of poetry and a collection of peace essays, all of which became New York Times bestsellers.

Messenger, which includes a foreword by Maya Angelou, is the story of Mattie’s remarkable life from his youngest days coping with the loss of his beloved big brother to mitochondrial myopathy, to his final hours. The book includes anecdotes, poems and Jeni’s recollections that have not appeared in print before. He was, she said, an “extraordinary boy who lived every day given to him to the fullest.”

The book can be pre-ordered from bookstores and online book sellers. For more information about activities celebrating Mattie’s accomplishments, go to

After Mattie’s death, MDA set up the Mattie Fund, which directs funds to mitochondrial myopathy research. As of August 31, 109,736 gifts totaling more than $3 million have been received through the Mattie Fund, direct appeals, the MDA Web site and unsolicited donations.

Books for bucks

To raise Telethon donations this year, MDA National Goodwill Ambassador Abbey Umali held a read-a-thon, securing donations for each book she completed. In six weeks, the 10-year-old avid reader finished 35 books (all at least 100 pages long), raising $5,385 for MDA. An animal lover, her book list included Old Yeller (dogs), Misty of Chincoteague (horses) and the Warriors series (roaming warrior cat clans).

Former ambassador continues work on academic credentials

Former MDA National Goodwill Ambassador Ben Cumbo (1996-1997), 22, continues to expand his education and worldview. In May of this year he graduated cum laude from St. Mary’s College of Maryland with a bachelor’s degree in sociology. Shortly afterward he landed an internship in the Obama White House. Now he’s back in school pursuing a master’s degree in Middle East studies at George Washington University’s Elliott School of International Affairs.

MDA Task Force adds new member

L. Vance Taylor is the newest member of MDA’s National Task Force on Public Awareness, a panel of community leaders with neuromuscular diseases organized around the goals of independence, awareness and leadership. Taylor, 32, who has Charcot-Marie-Tooth disease, lives with his wife, Casey, and daughters, Isabelle, 4, and Samantha, 2, in Oxon Hill, Md. He’s a principal in the Washington, D.C., government affairs and public relations firm Catalyst Partners and frequently meets with members of Congress as a volunteer with MDA’s Advocacy program.

MDA loan closets hit record in 2008

In 2008, MDA loan closets gave out an all-time high number of medical assistance items, from canes and shower chairs to communications devices and wheelchairs. At year’s end, more than 6,200 such items had been loaned to MDA families and individuals, a 15 percent increase over the previous 12-month period.

MDA joins the world of Twitter

News of MDA research advances, advocacy activities and services programs can be had on Twitter, the popular online social media tool, under MDA’s account, @MDAnews. The account links to MDA’s Facebook and YouTube sites, as well as its own social networking site, myMDA. Sign on to the account at

MDA and Walgreens fight the flu

The flu can be a serious illness for people with muscle disease, many of whom have weakened respiratory muscles. That’s why from now through February, MDA again is partnering with Walgreens to offer free seasonal flu shots to people registered with the Association. The flu vaccine also may be available through your local MDA clinic. To learn how to obtain a free flu shot, contact your local MDA office at (800) 572-1717, or see

In addition to getting a shot, people with neuromuscular disorders and their caregivers should take all possible precautions against the flu, such as frequent hand washing; use of gel sanitizer or hand wipes; avoiding touching the eyes, nose or mouth with unclean hands; avoiding unnecessary contact with sick people or crowds; and seeking medical care immediately if flu symptoms develop, such as fever or body aches.

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