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On September 25, The Association arranged for two people with ALS to appear at a Capitol Hill press conference convened to urge Congress to pass the “Medicare Access to Complex Rehabilitation and Assistive Technology Act The legislation, introduced by Representatives Tom Allen (D-ME) and Ron Lewis (R-KY), would exempt complex power wheelchairs from Medicare’s new competitive acquisition program, which is expected to be implemented in 2008. The Association is very concerned that competitive acquisition may limit the types of chairs available to people with ALS, reduce services, and force people with ALS to obtain chairs from suppliers who do not know the unique medical needs of people with ALS. (Click here to read The Association’s letter endorsing HR 2231.) The Association is the only national organization representing people with ALS to endorse HR 2231 and the press conference provided The Association with the opportunity to demonstrate how this issue would impact people with ALS specifically. At the press conference, Gwen Brooks and Tom Garafola, who both have ALS, shared their personal experiences with the disease and the important role power wheelchairs play in their lives. (Click here to read the Advocacy Update on competitive acquisition, including The Assocation’s press release.) First Month Purchase Option The Association also has urged Congress to reject proposals to eliminate the “first month purchase option” for power wheelchairs. The provision, which was included in the House-passed Children’s Health and Medicare Protection (CHAMP) Act would take away a person’s ability to choose whether to purchase a power chair and also would limit what type of chair they can obtain, particularly the highly complex power wheelchairs that people with ALS rely on throughout the course of their disease. (Click here to read The Association’s first month purchase option press release.) American Legion Convention Speech
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The evidence Leo shared with the commission were studies funded by The Department of Defense and the Department of Veterans Affairs that concluded that military veterans of the Gulf War in 1991 are approximately twice as likely to develop ALS than those who were not deployed to the war. He also discussed a Harvard University study that found military veterans from other eras are approximately 60 percent more likely to develop ALS.
During his speech, Leo provided the commission with an update on the Department of Veterans Affairs ALS Registry, which was established in 2003. The registry seeks to identify all living military veterans with ALS and collect data to support research investigating the causes of the disease. The registry also is designed to provide a way for the Department of Veterans Affairs to inform military veterans about research studies for which they may be eligible. The Association has worked closely with the Department of Veterans Affairs on this project, helping to identify military veterans with ALS and to promote the registry as an important resource for ALS researchers.
Leo provided an overview of ALS, the national office of The Association, its national network of chapters and partnerships with ALS clinics and centers.
“Our vision is about a quest to create a world that does not have ALS,” Leo said. “Our mission, which is the dream, the ultimate dream, is to lead the fight to discover treatments and a cure for ALS through cutting-edge research and through the notion of empowerment, empowering all people, individuals, our veterans and their families to live full lives by providing them with compassionate care and support.”
During the speech, Leo showed a video featuring military veteran Jim Thew, who has ALS, in Washington, D.C., participating in The Association’s National ALS Advocacy Day and Public Policy Conference. He also played “Bright Eyes,” a song that military veteran Andy Eddowes asked singer and songstress Anna Huckabee Tull to record for him that expresses his feelings to his daughter.
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The Walk could raise $30 million by the year 2012, said Ashton Chase, The Association’s senior director for national signature events. “The Walk is a phenomenal revenue generating stream, and there is a tremendous amount of potential to tap,” Chase said.
The telltale signs of more robust revenue days can presently be seen. Chase reported that the fall Walk season, which began in August, is off to a fast start with approximately 10 percent more walkers participating than compared to last year at this same time.
“Each year the Walk is setting new records and the momentum is propelling the event to new heights,” Chase said. “It does not take a crystal ball to predict that the Walk is headed to many wonderful places.”
A free vacation incentive program sponsored by Celebrity Cruise Lines and Royal Caribbean, who are Walk national partners along with Permobil and Booz Allen Hamilton, is a major reason why more walkers are participating in the Walks this fall,” Chase said.
Walk participants who register online 30 days before a Walk qualify to enter a raffle to win a seven-day Royal Caribbean cruise for two. All Walk participants raising $5,000 or more are automatically entered into the raffle.
By the conclusion of this year, 41 chapters will have held 152 Walks and raised approximately $14 million in revenue. The Walk has grown every year since it was launched in 2001 when it raised a modest $1.4 million.
Since the creation in April 2006 of The ALS Association’s online Community of Hope™ program, which honors people living with ALS, their families and caregivers, and people who bravely battled the disease, the program has raised nearly $230,000 for research, critical patient services, respite care, medical equipment, communications devices and support groups.
Community of Hope features easy to start individualized Web sites created by families than can include photographs, updates on the online Tribute Fund Page and a guest book with notes of encouragement from supporters. There are no fees involved in starting and maintaining a Web site. The latest information also be can emailed to families and friends.
There have been many Community of Hope success stories. For instance, more than 180 funds have been built by people who The Association refers to as “Champions.” The Joe and Jerry Grese Tribute fund raised approximately $49,000 in only two weeks.
“We need to let people with ALS know they are not alone. ALS affects more than nerve cells and muscles, it affects families, friends, co-workers and communities. Imagine the joy of seeing a Tribute Fund created in honor of someone special, or in memory of a loved one, or to acknowledge a personal commitment to the mission” said Sharon Teixeira, The Association’s ePhilanthropy coordinator. “Whether it is reading the online guest book, receiving emails when donations are made, or looking through online photo albums, it will all create lasting memories for those touched by the online Tribute Fund."
Families who participate in the program join the growing virtual community actively taking up the fight against ALS and are increasing public awareness about the disease.
“Many people have heard of ALS, but many do not understand the impact ALS has on individuals and families,” Teixeira said. “By sharing a personal story and photographs through a Community of Hope fund page, we work together to create a community that gives strength, renews the spirit and gives courage to loved ones, neighbors and friends facing uncertainty, fear and loss.”
For more information about the Community of Hope program, send an email to tributes@alsa-national.org or call 1-(888)-949-2577.
(L) Gary A. Leo, the president and CEO of The ALS Association, presented the organization’s prestigious Lawrence A. Rand Prize to Avichai “Avi” Kremer (R), who was diagnosed with ALS in 2004 as a first-year student at Harvard Business School in Cambridge, Mass. Kremer, 32, received a plaque that recognizes his major efforts in advancing ALS research and for establishing Prize4Life, a non-profit organization he and classmate Noah Boaz founded. The ceremony was held at the Harvard Center for Neurodegenerative and Repair, where Kremer works as an assistant director. Kremer, a former Israeli Army captain, has raised millions of dollars for ALS research, has worked to promote ALS awareness at Massachusetts General Hospital and started the for-profit biotech company AviTex. He graduated from Harvard Business School in 2007.
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