MDA Matters November-December 2005

by Quest Staff on November 1, 2005 - 9:56am

QUEST Vol. 12, No. 6

Featured in this article: MDA releases new teacher's guide, annual report * Flu shotsoffered * 'Wings' soars again * Personal Achievement Awards * 3 artists earn awards

MDA releases new teacher's guide, annual report

Teacher's Guide to Neuromuscular Disease cover

The MDA Publications Department has published “A Teacher’s Guide to Neuromuscular Disease,” a revision of the 1994 publication “A Teacher’s Guide to Duchenne Muscular Dystrophy,” which is now out of print. The new guide is available at local MDA offices.

The revised, 32-page illustrated booklet was prepared to assist teachers of youngsters with any neuromuscular disease, from kindergarten through high school age. The guide includes information on how a neuromuscular disease affects a student’s ability to learn, interaction in the classroom, medical needs and family dynamics.

Some disability education activities are suggested, and a section describes the characteristics of each childhood-onset neuromuscular disease in MDA’s program.

Amy Dunaway-Haney, a high school teacher with limb-girdle muscular dystrophy, wrote the foreword. Angela Wrigglesworth, an elementary school teacher with spinal muscular atrophy, penned the introduction.

MDA also has completed its 2004-2005 Annual Report, and copies are available at local MDA offices. The report covers the fiscal year that ended March 31, and contains the Association’s audited financial statement and a general overview of operations and accomplishments during the year.

Flu shots offered

Every fall, MDA offers those it serves free flu shots, because influenza can be extremely dangerous for people affected by neuromuscular diseases. For more information, call your local MDA office. Anyone taking immunosuppressant drugs like prednisone should consult with his or her doctor before getting a flu shot.

'Wings' soars again

Celebrities and New York financial leaders joined to raise $867,000 for MDA’s ALS Division at the fifth annual Wings Over Wall Street gala on Sept. 22. Since its inception, the event has raised more than $5 million.

The VIP cocktail reception and auction were emceed by actor William Baldwin and CNBC anchor Liz Claman. Lisa Marie Utasi, director, senior equity trader at Citigroup Asset Management, and Mary McDermott-Holland, senior vice president of Trading at Franklin Portfolio Associates, were the event co-chairs. Special awards were presented to neurologist Robert H. Brown Jr. of Needham, Mass., director of the MDA/ALS Center at Massachusetts General Hospital, and others for their efforts to fight ALS.

Time to honor achievers

MDA’s 15th annual Personal Achievement Awards program is under way, and the deadline for nominations is in late January. The awards recognize and honor the accomplishments and community service work of people with neuromuscular diseases. They’re awarded each year at local, state and national levels.

Self-Portrait 1 by Thomas Barnett

"Self-Portrait 1" by Thomas Barnett
Dad by Noelle Nevolo
"Dad" by Noelle Nevo

Anyone can submit a nomination. Pick up a nomination form and a set of guidelines at your local MDA office. See 2006 national award recipients — twins Kelly Buonaccorsi and Kristen Connors of Cranston, R.I.

3 young artists earn national awards

Three young artists with neuromuscular diseases have received awards from VSA arts and Volkswagen of America. The three were among 15 winners, all artists with disabilities ages 16-25, in the 2005 national juried exhibit. Each winner received a $2,000 award of excellence.

The three young artists are:

Hannah Miller, 24, of Chicago, for her photograph “Stilled Life.” She’s affected by Dejerine-Sottas disease.

Thomas Barnett, 20, of Chapel Hill, N.C., for his charcoal and chalk mixed-media artwork called “Self- Portrait 1.” He has Friedreich’s ataxia.

Noelle Nevolo, 26, of Brighton, Mass., for her oil on plywood painting titled “Dad.” Nevolo, who has type 3 SMA, won the $3,000 second prize for a painting in the 2004 competition.

The exhibit, Shifting Gears, can be seen online at

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