MDA Matters March-April 2008

by Quest Staff on March 1, 2008 - 3:45pm

QUEST Vol. 15, No. 2

Featured in this article: MDA opens ALS center ** Heartsongs award ** MDA New Orleans office reopens ** Kunkel named to chair MDA advisory committee ** Ben Cumbo featured in book

MDA opens 38th ALS center

MDA has opened its first Michigan center devoted to research and treatment of the deadly muscle disease ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease). The Michigan State University MDA/ALS Center will have clinical sites at both MSU’s Clinical Center in East Lansing and at Mary Free Bed Rehabilitation Hospital/Saint Mary’s Health Care in Grand Rapids.

While all nine Michigan MDA clinics serve people with ALS and any of the other 40-plus diseases covered by MDA, an ALS Center is distinguished by the amount of ALS research taking place there, and the vast experience of the medical staff in dealing with the disease. This is MDA’s 38th such center in the U.S.

An innovative collaboration between the two clinic sites will ensure access to state-of-the-art care for individuals and families living with ALS in Western and Central Michigan. The MSU site is at 138 Service Road, Suite A-117, East Lansing; phone is (517) 353-8122. The Mary Free Bed site is at 235 Wealthy St. SE, Grand Rapids; phone (616) 493-9583.

A complete listing of MDA clinics and ALS Centers can be found on the Web site,, or by calling (800) 572-1717.

’Heartsongs’ receives literature award

The Viet Nam Literature Association (VLA) recently presented a top award to a Vietnamese translation of poems by the late Mattie Stepanek, a former MDA Goodwill Ambassador who had mitochondrial myopathy. Mattie’s Heartsongs poetry was translated as Khuc Hat Trai Tim by Huu Viet, a poet who works for Tien Phong (Vanguard) newspaper in Hanoi.

Inspired by Mattie’s talents and his tranquil verses and prose, Viet wrote his first article about Mattie for the newspaper in 2004. Through his contacts in the U.S., Viet received approval to translate 40 poems that were published by Kim Dong Publishers and sold in book stores across the country. This is the first time a translation of children’s poetry has received the VLA award.

’Nawlins’ MDA office site reopens

When hurricanes Katrina and Rita took a savage swipe at Louisiana in 2005, they also did a job on MDA’s offices in New Orleans. Now those offices are up and running again.

Even though the offices were not structurally reconditioned for two years, MDA staff and doctors during that period continued to provide vital clinic and support services to more than 700 families in the greater New Orleans area.

The offices are located at 4401 N. I-10 Service Road, Suite 104, Metairie, LA 70006; phone is (504) 455-4460.

New MDA Medical Advisory Committee chairman appointed

Louis M. Kunkel

Leon Charash, a specialist in pediatric neuromuscular disease and longtime chairman of MDA’s Medical Advisory Committee, has retired from that position. Replacing him is neurologist Stanley H. Appel, who was chairman of MDA’s Scientific Advisory Committee. Appel heads the MDA/ALS Clinical Research Center at the Methodist Neurological Institute in Houston.

The new head of the Scientific Advisory Committee is Louis M. Kunkel, a professor of pediatrics and genetics at Harvard Medical School in Boston, where he’s a Howard Hughes Medical Institute investigator. Kunkel is also a longtime MDA adviser and a former research grantee. Of his many scientific accomplishments, one of the most important was his discovery of the dystrophin gene which, when defective, causes Duchenne muscular dystrophy.

Best-selling author Richard M. Cohen has written a new book that takes a close look at the inner conflicts and motivations of five people with chronic disabilities.

Among them is 20-year-old Ben Cumbo, Jr., MDA’s National Goodwill Ambassador in 1996 and 1997, who has Duchenne muscular dystrophy.

Along with Cumbo, Cohen’s subjects include Denise Glass of Thousand Oaks, Calif., who has ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease). Like Cumbo, Glass is registered with MDA. The book’s other subjects include a woman with Crohn’s disease, a man with non-Hodgkin’s lymphoma, and a man with bipolar disorder.

Cohen spent three years and developed intimate relationships with all of his subjects to research Strong at the Broken Places: Voices of Illness, a Chorus of Hope.

In Cumbo’s case, the author spent time with and grew close to Ben as well as his parents and sisters. At their home and when visiting Ben at college, Cohen delved into the young man’s past, his frustrations with having to rely on others for assistance, his increasing awareness of his African-American ethnicity, his yearnings for a girlfriend, anxieties about the future and his eventual ability to cope with his inner demons.

The book is published by Harper-Collins Publishers, $24.95. The author also has established a Web site,, where others with disabilities can share their own stories.


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