MDA Puts ALS in the Public Eye

by ALSN Staff on Thu, 2008-05-01 17:00

To promote the 17th annual national ALS Awareness Month this May, MDA has planned a number of national and local events designed to increase public awareness of ALS.


Facts About ALS booklet cover
Just in time for ALS Awareness Month is the recently updated and redesigned “Facts About ALS” booklet.

Throughout May, “ALS: Anyone’s Life Story,” will be featured on MDA’s ALS Division Web site ( and the Association’s main site ( This interactive feature highlights the stories of 31 individuals with ALS in 23 states — a new person each day of the month. Local media have been alerted that these individuals living in their areas have important stories to tell.

Also on the MDA Web site, special ALS Awareness Month chats will be held during May, in addition to the regularly scheduled “Living with ALS” chats.

MDA is releasing two publications and an emergency health information organizer in May. The publications include the new MDA ALS Caregiver’s Guide and an updated version of the booklet “Facts About ALS,” with new information about research and clinical trials. This booklet is a user-friendly introduction to ALS for friends, family, healthcare workers and others.

The bright yellow emergency health information envelope, available at your local MDA office, keeps important documents and information posted on the refrigerator, readily available for emergency hospital trips or 911 calls.


MDA-sponsored events around the country are designed to offer support to those coping with ALS, and information to the general public about the disease. Below is a sampling of local events; contact your local MDA office to learn out about events in your area by calling (800) 572-1717.

May 21 is “ALS Awareness Night” at Turner Field. Families affected by ALS and local MDA sponsors can purchase tickets for half-price to see the Atlanta Braves take on the New York Mets. During the game, awards will be presented to Kroger grocery employees with the top Shamrocks Against Dystrophy sales. As people arrive for the game, Atlanta Fire Departments will Fill-the-Boot for ALS research. Since it’s also “Harley-Davidson Owners Group Night,” H.O.G. members will ride from the Harley-Davidson dealership to the stadium, and the 100 top fundraisers will ride in a pre-game parade around the warning track. On May 3, the seminar “ALS Research 101,” will be held at the Sheraton Gateway Hotel Atlanta Airport, focusing on new trends in ALS research with a guest speaker from the ALS Therapy Development Institute in Cambridge, Mass. For more information, call Vicki Cunneen at (770) 621-0355.

“MDA/ALS Spring Fling Picnic,” an evening of ALS awareness and family fun for the local ALS support group, will be held at Keswick Home on May 8. Food and entertainment will be provided. May 18 is “ALS Awareness Day” at Camden Yards, when the Orioles take on the Washington Nationals. Various ALS-awareness activities will be held at the ball park. For more information, call Laurel Gaffney at (410) 494-7106.

A three-mile ALS Walk will be held at Arthur Fiedler Field near the Hat Shell on May 18. For more information, call Mary Leeman at (508) 898-3375.

Columbus, Ohio
“Management of ALS: a Multi-Disciplinary Approach” will be held at the Fawcett Center at Ohio State University on May 9. The seminar will welcome several speakers, including MDA/ALS Center clinic team members, equipment vendors, a hospice nurse and a national Permobil wheelchair representative. The event is free and lunch will be provided. For more information, call D. Blythe Hundley at (614) 841-1014.

“An Afternoon with the Experts,” a symposium to be held at the Denver Zoo conference area on May 2, will feature a panel of researchers discussing recent ALS research and clinical trials. MDA/ALS clinic team members will talk about nutrition and respiratory needs in ALS. Medical supply venders and other disability related businesses will have product and information displays. Call ahead for conference reservations and free tickets to the zoo. For more information, call Linda Johnson at (303) 691-3331.

emergency info
The emergency health information envelope organizes vital information.

El Paso, Texas
May 9 is “Fire Fighter Appreciation, ALS Awareness Night” at El Paso Diablos’ Cohen Stadium. After the baseball game, fans are invited on the field where “Pride of the Yankees,” a movie about Lou Gehrig, will be shown on the pitcher’s mound. For more information, call Thelma Herrera or Kathleen Born at (915) 584-6355.

At Queen’s Conference Center on May 3, the 8th annual ALS seminar will feature a variety of guest speakers who provide community resources to families affected by ALS, including MDA/ALS clinic team members and representatives from medical vendors and government services. The seminar also will feature breakout rooms focused on medical care, finance, law, insurance and travel. For more information, call Jennifer Li at (808) 593-4454.

Los Angeles/Southern California
“CommUNITY for a Cure,” a seminar that focuses on community involvement to spread ALS awareness, will be held at the Evangelical Christian Credit Union (ECCU) in Brea on May 3. The event will promote the UCLA MDA/ALS clinic and new support groups, and will feature keynote speakers and equipment vendors. Also during the seminar, three Los Angeles-area individuals with ALS will be recognized for their outstanding community involvement since learning they have ALS. During the provided lunch, “The Sky’s the Limit” balloon launching ceremony will take place to raise public awareness of ALS. The names of individuals living with ALS and those who have died as a result of the disease will be written on note cards, then attached to blue balloons and released. For more information, call Andi Sass at (310) 450-9032.

ALSN Staff
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