It’s May, and MDA is in full swing as it commemorates the 16th annual national ALS Awareness Month. The goal is to spread the word about the devastating disease, and about the health care services, research and public education programs of MDA’s ALS Division.
To campaign for increased public awareness of ALS, the Muscular Dystrophy Association is promoting a series of public service announcements (PSAs) featuring some of the people with ALS whose stories are told in “ALS: Anyone’s Life Story”.
As part of the same campaign for public awareness, MDA is issuing a new MDA ALS Division brochure, a concise description of MDA’s ALS program. The brochure includes a summary of the services MDA offers, Web site addresses and contact information.
MDA is also offering “Milestones in ALS Research.” “Milestones” provides a timeline that traces significant events in the history of ALS and important research efforts supported by the Association.
MDA will sponsor two special ALS Research Updates chats during ALS Awareness Month. One will be devoted to recent research advances, while the other will address upcoming research efforts; one will occur during the first week in May, while the other will occur during the last week. The times and dates will be posted on the MDA Web site. The chats will be open to anyone who has registered, and anyone can register immediately.
Throughout the month, MDA offices across the country hold ALS-centered events and seminars. For more information on an event in your area, contact your local MDA office.
The Portland MDA office has published a special ALS Awareness Month newsletter highlighting a number of people with ALS in the community, including Jeff Young, who is profiled in MDA’s online “ALS: Anyone’s Life Story” series May 6. Portland’s MDA office also is sending letters to all Oregon and Southwest Washington neurologists informing them of services offered by the MDA ALS Division. A series of ALS Awareness dinners will be held in the homes of families affected by ALS.
During May, TV station KPRC (a member of the “Love Network” that broadcasts the Jerry Lewis MDA Telethon) will air an ALS story featuring a local family served by MDA. In addition, Houston’s MDA office is sending letters to local families affected by ALS recapping services offered by MDA’s ALS Division. On May 12, the ALS Support Group will meet at Spring Shadows Pines. After a joint meeting for people with ALS and their caregivers, the two groups will meet separately.
MDA Day at the Bisons will take place at Dunn Tire Park May 9. John Berkhoudt, who has ALS, and his barbershop quartet, the Friends of Harmony, will perform the national anthem and throw out the first pitch at the Buffalo Bisons minor league baseball game. Prior to the game, there will be a tent party, and MDA families can purchase tickets at discounted prices.
The ALS Life Planning Conference will be held at St. Joseph’s Hospital May 11. Dietrich Stephan from the Translational Genomics Research Institute (TGen) will speak on genetic predisposition to sporadic ALS.
The local MDA office will hold an ALS Awareness silent auction during the May 12 Tennessee Smokies baseball game. Baseball memorabilia will be auctioned off.
The Living with ALS: A Daily Journey seminar, to be held at the Concourse Hotel May 19, will explore the issues of everyday life with ALS. Speakers will include physical, occupational, respiratory and speech therapists; neurologists; and Medicare and Social Security experts. The event is free and open to the public.
The Conference of Southern California at the Anaheim Convention Center May 5 will focus on ALS research breakthroughs. Keynote speakers include MDA ALS Division Co-Chairperson Augie Nieto, Hans Keirstead from the University of California at Irvine, and Sean Scott from the ALS Therapy Development Institute. Marilyn Cooper, a member of the MDA National Task Force on Public Awareness, will speak about her life since her ALS diagnosis 32 years ago.
The annual ALS seminar will have a new twist this year. Taking place at Queen’s Conference Center May 19, the event will be a spa day aimed at showing people how to pamper their loved ones who are affected by ALS. Free and open to the public, the spa day will concentrate on accessible travel, fashion and beauty, health and medical issues, and law and finance.
Throughout May, area MDA clinics will post in their exam rooms information about ALS and MDA’s recent research breakthroughs. The one-page sheets are available for visitors to take home. The May 16 ALS support group will have a special seminar on the importance of planning. Speakers will include financial and legal experts who have ALS themselves.
The Field of Dreams fund-raising event will be held at Joe Black’s Restaurant & Pub May 2 and 3. Corporate sponsors who come to the event donate funds for ALS research minutes by sponsoring 20 minutes ($1,300) for a single play, 40 minutes ($2,600) for a double play and 60 minutes ($3,900) for a triple play. The top 20 fund-raisers will receive two tickets for VIP skybox seats at a minor league baseball game.
Shawnee Mission, Kan.
During the May 17 ALS support group, pictures will be shown of the April 9 signing of a proclamation announcing May as ALS Awareness Month in Kansas by Gov. Kathleen Sebelius. People with ALS will be invited to the May 20 Kansas City T-Bones baseball game, where one family will get to throw out the first pitch. Information about MDA’s ALS Division will be distributed.
The Baltimore MDA office will hold its MDA/ALS Spring Fling Picnic at Keswick Home May 10. The evening of ALS awareness and family fun will be held during the season’s last MDA/ALS support group meeting. The May 12 MDA/ALS Caregiver Cookout, which will be held at the home of MDA/ALS Outreach Committee member Pat Fraher, will give caregivers encouragement, support and understanding about living with a loved one with ALS.
El Paso, Texas
May 18 is Lou Gehrig’s Awareness and Fire Fighter Appreciation Night at El Paso Diablos’ Cohen Stadium, and one ALS family will throw out the first pitch. There will be New York Yankees items for auction. After the baseball game, spectators can gather on the field to watch “Pride of the Yankees,” the Hollywood account of Lou Gehrig’s life, which will be shown on a screen placed on the pitcher’s mound.
On May 11, the symposium An Afternoon with the Experts will be held in the conference area of the Denver Zoo. A panel of researchers will discuss ALS research breakthroughs and a current clinical trial, and introduce patients involved in the trial. The conference, complete with tickets to the zoo, is free. Call ahead for reservations. For more information, call Linda Johnson at (303) 691-3331.