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Issue 19 May 2008 In This Special Edition of The Exchange. . . ‘ALS Across America’ Honors Role Models   Storm Motivates at Advocacy Day   ‘ALS Across America’ Remembered in Video   Stamps Can Increase Awareness of ALS   Film Looks at World Through Eyes of ALS The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against amyotrophic lateral sclerosis. Through research, patient services, public policy and education, The Association is dedicated to finding a cure for and improve living with Lou Gehrig’s Disease. Click here to contact your local chapter. ‘ALS Across America’ Honors Role Models Lou Gehrig’s Disease can strike anyone, anytime and any place, and out of this group has arisen real heroes who are more than willing to help other people battling the same condition. The point is driven home this month during National ALS Awareness Month through The ALS Association’s ‘ALS Across America’ campaign by shining the spotlight on those with ALS and their caregivers doing as much possible to enhance the quality of life for others living with the disease. A special ALS Awareness Month page on the organizations Web site features profiles about 30 courageous people with ALS from all walks of life and all areas of the country. Their stories of bravery and selflessness were chosen by The Association’s national network of chapters because they exemplify the spirit of  “ALS Across America.” Despite the fact they have ALS or are taking care of someone with this disease, they think of and help others in similar circumstances before themselves. “These special individuals reflect the spirit of the organization as they make a positive difference in their communities by expanding awareness of ALS and embodying the spirit of living life to the fullest,” said Gary A. Leo, president and CEO of The Association. “They are truly role models, a beacon of hope to all of society because they have not allowed a terrible disease to triumph.” (L) Matt Wey, the president of The ALS Association Michigan Chapter’s Board of Directors, presents Eric and Lori Fox with a ‘ALS Across America’ certificate. There is not one segment of society that has escaped the impact of ALS, commonly referred to as Lou Gehrig’s Disease, and the “ALS Across America” profiles reflect this diversity. The progressive, neurodegenerative disease affects 30,000 Americans annually in this country. The average survival rate is two to five years from the time of diagnosis. Throughout ALS Awareness Month, The Association and its nationwide network of more than 100 affiliates will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past. ALS Awareness Month activities include proclamations issued by cities and states. TOP Storm Motivates at Advocacy Day Hundreds of people from throughout the country in Washington, D.C., for The ALS Association’s three-day annual National ALS Advocacy Day and Public Policy Conference, May 11-13, to find a treatment and cure for Lou Gehrig’s Disease, participated in the 5th Annual Candlelight Vigil.    Bud and Julie Kottsick of North Dakota with their daughter Carly light a candle at the Fifth Annual Candlelight Vigil during National ALS Advocacy Day. The National ALS Advocacy Day and Public Policy Conference has grown into the single largest gathering of the ALS community. Not even a torrential rain could cause the postponement of the candlelight vigil on Sunday, May 11. Instead, the deluge unified the group, people living with ALS and their loved ones, as well as officials from The Association, even more as they moved indoors with an even stronger resolve.  Once inside, members of the group shared their experiences about living with ALS. The inclement weather did not deter anyone from carrying on with their mission and the main purpose for traveling to D.C.: to eliminate ALS from the face of the Earth. On Tuesday, May 13, advocates met with their members of Congress on Capitol Hill to advance The Association’s public policy priorities, including: enacting the ALS Registry Act and securing $5 million to expand the National ALS Registry; establishing ALS as a service connected disease to ensure veterans with ALS have access to needed benefits; and continuing funding for the ALS Research Program at the Department of Defense, which is seeking new treatments for the disease.   In the past year, advocates for The Association have helped accomplish the following: Introduced and passed the ALS Registry Act in the House of Representatives by an overwhelming 411-3 vote. The bill would authorize $89 million to establish a national ALS patient registry at the Centers for Disease Control and Prevention (CDC).   Won the support of more than two-thirds of the Senate as cosponsors of the ALS Registry Act, leading the Senate Health, Education, Labor and Pensions Committee to pass the bill by unanimous vote.   Secured nearly $3 million in funding to build upon and expand ALS registry pilot projects underway at the CDC, a $2 million increase during a year when most other health programs were cut or received little or no additional funding.   Partnered with the Department of Defense as it provided $5 million to establish the first-ever ALS Translational Research Program.   Enacted legislation that provides much needed resources to the Food and Drug Administration and will help to bring new treatments for ALS from the lab to the bedside as soon as possible.   Advanced the fight in support of veterans, who are at a greater risk of ALS, by increasing funding for ALS research at the Department of Defense, including $10 million for Gulf War Research and $50 million for the Peer Reviewed Medical Research Program (PRMRP). Congress named ALS as one of only a small handful of diseases eligible for funding under the program. TOP ‘ALS Across America’ Remembered in Video   The late car aficionado John “J.J.” Bouma, Jr. as he prepared for his trip from the Midwest to the West Coast.  In 2006, photographer David DeJonge and videographer Brett Ellens traveled alongside the late John “J.J.” Bouma, Jr., on his cross-country ALS fundraising trip on Route 66 from Grand Rapids, Mich., to Santa  Monica, Calif.  Bouma, who rode in a Chevrolet Corvette, was diagnosed with ALS one year earlier. He passed away last year.  While DeJonge took photographs for a book and a traveling photo exhibit, DeJonge created the ’ALS Across America’ video of Bouma and other people with ALS who reside in the states along the celebrated road. Both works have raised awareness of the diverse “face of ALS.” Bouma thought that a cruise in an open car to California on the historic route would be the drive he always wanted to take. He shared his idea with The ALS Association. “J.J.’s Cruise 66 for ALS” began at Pal’s Diner and ended at the Santa Monica Pier where Bouma presented a check to The Association’s West Michigan Chapter and to The Association’s president and CEO, Gary A Leo. Bouma, and his wife Pam, set a goal of raising $66,000 for “J.J.’s Cruise 66 for ALS” through donations that have been used for patient services for Michigan residents with ALS and research for a cure. Of the trip, Pam Bouma said, “Hope is, and will be, the ‘fuel’ to keep us going along Route 66 all the way to national headquarters, presenting a pledge check for funds raised along this journey of life.” Also accompanying Bouma and DeJonge on this excursion were Dr. Ed Dobson and his wife Lorna of Calvary Church of Grand Rapids, Mich. TOP Stamps Can Increase Awareness of ALS By Janie Barber, Communications Coordinator  The ALS Association is dedicated to “stamping” out Lou Gehrig’s Disease.   The new National ALS Awareness Month stamp is accepted by the United States Postal Service. The ALS Association has created its first-ever commemorative postage stamp for use as a national program to promote National ALS Awareness Month.  The stamp, which features the National ALS Awareness Month logo, is an officially-recognized United States postage stamp; and will be sold exclusively through Zazzle.com, an online retail outlet that enables users to create their own product galleries. The Association is recognized as an approved member of the Zazzle Community Giving Program. The link to Zazzle has been placed on The Association’s Web site, where it will remain through the conclusion of ALS Awareness Month.  Beginning May 1, 2008 a link to Zazzle.com will be placed on all Association chapter Web sites as part of the campaign to promote ALS Awareness Month. Although this is primarily a public awareness program, The Association also will be raising funds in this endeavor. Royalties of up to 27 percent of sales will be donated to research to find a cure for Lou Gehrig’s Disease.  TOP Film Looks at World Through Eyes of ALS The timing could not have been any better for the release during National ALS Awareness Month of a critically acclaimed motion picture film about a person living with Lou Gehrig’s Disease.     Ben Byer traveled to the Middle East “It is fitting that the film is premiering this month,” said 37-year-old Ben Byer, who wrote, directed, produced and stars  in “Indestructible,” which chronicles three years in his fight against ALS and travels to six countries to find a cure and other answers. “ALS is a lonely universe,” said Byer, a fledgling theater artist before he was diagnosed with the disease and the father of an eight year old son, John. “People need common goals to rally around. Whether research, a film, or ALS Awareness Month, it is extremely important to be engaged in the fight. It’s all part of the same stew.” Since there had been other movies made about ALS, Byer’s goal was for his film to artistically resonate on a deeper emotional level. He also wanted to show what the world looks like through the eyes of ALS. “This is the first film in the history of cinema, as far we know, to be made by and about an ALS patient to be released on the national stage,” Byer said. “This is the first in-depth look at the disease where the driving creative force is suffering from it. This is a new step in creating an authentic voice from within the ALS community.” The film turned out better than anything Byer envisioned, however, he is realistic about how much the film can accomplish in turning the tide on the disease. “On an advocacy level, we have just packed our equipment to climb Mt. Everest,” he said. “It’s hard to imagine ALS will change without a major shift in public perception of the disease. That’s going to take much more than one film.” The film has won numerous awards at film festivals. "An intimate, lacerating, absorbing visual diary...'Indestructible' is an immersive, edifying journey of acceptance, setback, and strength,” wrote Variety. The fact that the film was made at all, considering the physical challenges, is a victory in itself, not to mention the budget of only $200,000 raised from private donors. “I faced the same sort of challenges 30,000 people in the U.S. face every day. Putting my pants on, eating a plate of food, walking to the car, and explaining this disease to my kid,” Byer said. “Making movies is hard, making good movies is even harder and making good movies when you have ALS, well, that’s what I do.” The movie opened on May 2 in Madison, Wis. For more information about the film, visit www.indestructiblefilm.com. Where “Indestructible” will be playing: Los Angeles, California May 16-22 Laemmle Cinemas Grande 4 345 South Figueroa St. Los Angeles, California (213) 617-0268 laemmle.com San Francisco, California May 30-June 5 The Roxie Cinema  3117 16th Street @ Valencia San Francisco, California (415) 863-1087 roxie.com TOP Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.