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The three-day conference, which takes place May 15-17, empowers people with ALS, their caregivers and families with the ability to fight this disease through advocacy, turning their hope into action. The conference program includes a series of educational breakout sections that provide attendees with the latest updates on ALS research as well as the top public policy issues facing the ALS community today, including the establishment of an ALS Registry, the connection between ALS and military service, and the development of treatments for ALS. Attendees also will be given important tools they need to continue their advocacy efforts throughout the year. And they will have an opportunity to use these tools on the third day of the conference when they meet with their members of Congress for an advocacy day on the Hill. “Advocacy Day puts a face on this disease,” said ALSA Government Relations and Public Affairs Vice President Stevan Gibson. “It allows people with ALS and their families to tell the ALS story to their representatives in Congress, letting them know the true nature of this disease. In making these personal connections, members of Congress see first hand why they need to join us in the fight for a treatment and a cure.” However, perhaps the most memorable part of the conference is the candlelight vigil which will be held at the Lincoln Memorial on May 15. The vigil provides the ALS community a time and a place not only to reflect on why there is a gathering in Washington D.C. each year, but also to pay tribute to those still living with ALS and to honor those who have lost their battle against this disease. “It’s an incredibly powerful experience, beginning at dusk with music and speakers and everyone gathered together holding their candles for a common purpose,” said ALSA Greater Philadelphia Chapter President Ellyn Phillips, a member of ALSA’s National Board of Trustees and co-chair of the National Advocacy Trustee Committee. “You look around and wonder how many of the people with ALS will be around next near, and you think, ‘we’ve got to do everything we can to make sure that they are.’ It sets the tone for the conference. Nobody forgets it.” When Advocacy Day started in 1998, approximately 100 people attended. This year, attendees will advocate for passage of legislation to establish a National ALS Registry (H.R. 4033/S. 1353) as well as continued funding for ALS-specific programs at the Department of Defense. It is clear that ALSA's efforts in Washington D.C. are making a difference. Since the first National ALS Advocacy Day in 1998, federal funding for ALS research has increased from $15.1 million in 1998 to an estimated $50 million in 2006, including funding from the National Institutes of Health (NIH), the Department of Defense and the Department of Veterans Affairs. ALSA established a presumptive disability ruling at the Social Security Administration and enacted historic legislation to waive the 24-month Medicare waiting period for people with ALS. In fact, ALS is the only disease for which Congress has waived the waiting period since it was first established. Join fellow advocates in Washington D.C. for ALSA’s 2006 National ALS Advocacy Day and Public Policy Conference by registering via the Advocacy Day page of the ALSA’s website at www.alsa.org/policy/alsday.cfm or by calling the Advocacy Hotline at (877) 444-ALSA.The Walk to D’Feet ALS Strives
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The ALS Association’s national signature event, the Walk to D’Feet ALS®, is taking giant steps.
Ashton Chase, ALSA’s senior director for National Signature Events since last October, is determined to bring the Walk to more successful, greater heights during the 2006 season. The Walk was held in 150 cities in 2005 and attracted nearly 65,000 participants, impressive numbers that Chase is working to expand.
“The Walk to D’Feet ALS is a tremendous program with immense opportunity for continued growth and success,” said Chase, in non-profit management for the last 14 years. “During the 2006 season we are particularly eager to increase our partnerships with corporate sponsors on a local, regional and national level.”
Before joining ALSA, Chase’s leadership and training led to a significant increase in walk revenue at the Juvenile Diabetes Research Foundation, and before that, at the Cystic Fibrosis Foundation. The graduate of the University of Colorado at Boulder is determined to duplicate these successes at ALSA.
“We are excited to bring the Walk to D’Feet ALS to a higher level of achievement,” Chase said. “We are confident the Walk can significantly grow in 2006 for all of our chapters and for years to come.”
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In 2005, more than half of ALSA’s chapters raised more money than in the previous year, while eight chapters exceeded revenue by 50 percent. The donations, which fund cutting-edge research and patient services programs throughout the country, are expected to increase from $10 million in 2005 to $12 million in 2006.
One ALSA chapter Walk team, based on Long Island, N.Y., made a significant contribution to last year’s Walk season. The “For the Love of Jemma” team raised more than $100,000 for the Greater New York Chapter last September, mostly by eliciting funds through a letter-writing campaign.
“The Walk to D’Feet ALS has found great growth and success in recent years,” Chase said. “The dedication and commitment of ALSA staff, board of directors, volunteers and participants nation-wide has carried this program to an impressive level of achievement across the country.”
For more information about how to support and participate in the Walk, contact 888-WALK ALS or walk@alsa-national.org. For a comprehensive list of the Walk schedule, click here . |
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The ALS Association is “going deep” again in its fight against ALS as part of Minor League Baseball’s Charity Partners Program (CPP). By participating in the program in 2006 and 2007, ALSA’s slugging percentage against ALS will increase, a tape measure effort that will contribute to the day when “she’s gone” also means ALS is no more.
The strong bond between ALSA’s national network of chapters and Minor League Baseball dates back several decades and was fortified in 2003 when Minor League Baseball launched CPP and welcomed ALSA aboard to jointly create exciting public relations programs and fundraising events to benefit people with ALS as well as draw more fans to games.
In 2005, the ALSA-CPP hit parade was led with more radio interviews about ALS, game-day programs with ALSA advertisements and the portion of the sale of “It’s Fun to be a Fan” bracelets that went to ALSA. Rounding the bases were players and coaches who were more than willing to donate tips they received while masquerading as waiters and bartenders along with many other efforts.
“Town by town, local chapter by local chapter, The ALS Association is honored to be an official charity partner of Minor League Baseball,” said ALSA President and CEO Gary Leo. “Through the generosity of Minor League Baseball, The ALS Association has built a winning partnership that benefits teams, communities, fans, and most importantly, patients living with ALS in their hometowns.”
“Minor League Baseball’s Charity Partners Program allows us to nurture the relationships between our clubs, fans and national charity partners,” said Minor League Baseball President Mike Moore. “It’s a pleasure for us to be involved with ALS and other such worthy causes and assist them in helping educate the public and to provide help for so many people.”
The number of teams involved in the fight against ALS has risen from approximately 25 in 2003, 46 in 2004 to 80 teams in 2005 and 2006, while donations have increased from $200,000 in 2004 to as much as a projected $400,000 in 2006.
ALSA Community Services Director Nancy Venner was very pleased that Minor League Baseball asked ALSA to remain on the Charity Partners Program roster.
“Things are going so well that Minor League Baseball wanted The ALS Association as a partner for another two years,” Venner said. “Minor League Baseball has done a fabulous job of promoting the many mutually beneficial aspects of this program to its 160 teams, and the great majority of our national chapters also have really been diligent about pursuing teams to join us in our efforts to improve the quality of life for people living with the disease and to one day finding a cure.”
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Venner estimates that in the last three years hundreds of thousands of people who have attended Minor League Baseball games across the United States have become more familiar with the disease. Public service announcements (PSAs) shown on Jumbotron scoreboards as well as on audio messages have complemented special pre-game promotion. During and following games, many individuals and families have dropped by to say hello at ALSA’s concourse information booth. Some have the disease and did not know where to turn to for help, and others know of someone with ALS who they can now refer to ALSA.
“It is these types of efforts on behalf of Minor League Baseball that helps The ALS Association accomplish its mission,” Venner said. “The extra exposure helps us recruit more volunteers and potential board members and obviously raises general awareness and money. There is no doubt that this partnership has lent us credibility.”
Venner also said that fans who are present at stadium and off-site events such as Lou Gehrig Day at the Ballpark and participate in K’s for a Cure – Help Strike Out ALS, Team Autograph Party and Auction and the Walk to D’Feet ALS understand teams are committed to more than developing Major League Baseball prospects and winning.
“They realize that their team cares about the community, and that is very important for Minor League Baseball because it is focused on creating a wholesome family experience,” Venner said. “This keeps people in a positive mind frame, one which brings them back to the stadium time and time again.”John “J.J.” Bouma, Jr. has enjoyed traveling throughout his lifetime, but a trip planned in May in a 2006 Chevrolet Corvette from Grand Rapids, Mich., to Santa Monica, Calif., along the old Route 66 may prove to be unlike any other for this car buff and his traveling companions.
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Chairman of the board of directors of The Bouma Corp., a nationally-recognized commercial construction company, Bouma, 54, was diagnosed with ALS in September 2005 at The University of Michigan and Mayo Clinic. He has the bulbar form of ALS and speaks with the assistance of an augmentative communication device.
Photographer David DeJonge will accompany Bouma on this excursion. DeJonge will take photos of Bouma and other ALS patients who reside in the states along the celebrated road. The photos from the cross-country voyage will be used for a book and a traveling photo exhibit, both of which will raise 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 ALSA West Michigan Chapter Executive Director Tom Farley. “J.J.’s Cruise 66 for ALS” will begin at Pal’s Diner in Grand Rapids, Mich., on Thursday, May 18 and finish on Wednesday, May 24 at the Santa Monica Pier in Santa Monica, Calif. Bouma will present a check to ALSA – West Michigan Chapter Board of Directors President Mike Melcher and ALSA President and CEO Gary Leo. Melcher was diagnosed with ALS in 1998.
Bouma, and his wife Pam, have set a goal of raising $66,000 for “J.J.’s Cruise 66 for ALS” through donations to be used for patient services for Michigan residents with ALS and research for a cure.
Of the trip, Pam Bouma says, “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 will be Dr. Ed Dobson and his wife Lorna of Calvary Church of Grand Rapids, Mich. Dobson, who is also fighting ALS, has been named the “Chaplain” of Cruise 66 for ALS.
“I look forward to meeting John at the finish line of this inspiring cross-country trip to increase the visibility of Lou Gehrig’s disease,” Leo said.
May is ALS Awareness Month, and from May 15-17, ALS advocates nationwide will meet in Washington D.C. for ALSA’s 2006 National ALS Advocacy Day and Public Policy Conference. The highlight of the conference will be the 3rd Annual Candlelight Vigil which will be held in front of the Lincoln Memorial beginning at 8:30 p.m.
For more information about John Bouma’s trip along Route 66, visit www.cruise66forals.org and to learn more about ALSA’s Advocacy Day, go to www.alsa.org/policy.
Nick Scandone, diagnosed with ALS in 2004, was named US SAILING’s Rolex Yachtsman of the Year in 2005 for winning major races against able-bodied and physically challenged competition. He was presented with an engraved Rolex timepiece at a ceremony held last February at the New York Yacht Club in Manhattan. Scandone, 39, and his wife, Mary Kate Scandone, live in Fountain Valley, Calif., and receive support from ALSA’s Orange County Chapter.
Photo credit: Rolex/Dan Nerney.
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