2007 National ALS Advocacy Day
and Public Policy Conference
Online Registration Available
Online registration is now available for the 2007 National ALS Advocacy Day and Public Policy Conference, which takes place in Washington D.C., May 14-16.
To attend the conference and find additional information, including a printable registration brochure that provides a detailed schedule of events for this year’s conference, please click here. A video showing highlights from last year’s Advocacy Conference also is available here.
 In addition to Advocacy Day on Capitol Hill, this year’s conference includes the fourth annual candlelight vigil and informative sessions on ALS research and initiatives designed to speed access to new treatments for the disease.
Since Advocacy Day was created 10 years ago, advocates have raised more than awareness of ALS in the halls of Congress. They have fought for and passed significant legislation that not only benefits the lives of people with ALS and families today but also those whose fight has not yet begun.
Since 1997, The ALS Association has more than tripled annual federal funding for ALS research from $15 million to more than $53 million; enacted legislation to waive the 24-month Medicare waiting period for people disabled with ALS – the only time Congress has waived the waiting period since the program was first implemented; and secured nearly $1 million in Congressional funding to establish the building blocks for the first ever national ALS Registry at the Centers for Disease Control and Prevention (CDC).
Most recently, The Association helped to pass legislation authorizing $290 million in funding to improve and expand the availability of respite care services. In addition, President Bush included funding for an ALS registry in his fiscal year 2008 budget. This is the first time the registry has been included in the budget, a major accomplishment considering that the budget reduces or eliminates funding for many other health programs.
Each of these issues was included on the Advocacy Day agenda in previous years, and these victories could not have been achieved without the tireless efforts of advocates to promote these issues at Advocacy Day.
For more information about this year’s conference, contact The Association’s Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
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Incentives Add to the Excitement
of Growing Walk to D'feet ALS
A free, relaxing getaway aboard several of the world’s top cruise lines awaits the individuals or teams who raise the most money in 2007 for the Walk to D'feet ALS®, The ALS Association’s national signature fundraising event.
The Walk helps The Association’s national network of chapters continue to provide quality of life by improving services and programs to people with ALS and their families. The Walk also helps The Association fund international research.
Top participants in the Walk, held year-round, will receive a seven-day cruise for two people aboard Royal Caribbean International and Celebrity Cruises. In addition, anyone who raises $5,000 or more online will automatically be entered into a drawing for the same prize.
There also will be incentives for others to excel. Permobil, Inc., the wheelchair manufacturer that provided actor James Woods with a C500 Corpus model wheelchair for his role as a person with ALS last year on the NBC show “ER,” has donated four such wheelchairs to The Association. Chapters that enter and win a drawing will receive the state-of-the-art wheelchairs for loan closets. The “ER” wheelchair was later auctioned off with the proceeds donated to The Association.
As a result of the incentives, a new motivational “Why We Walk” video narrated by actress Kate Linder from “The Young and the Restless,” and a stronger volunteer system, more people potentially could register for the Walk, said L. Ashton Chase, The Association’s senior director for national signature events.
The goal this year is to raise approximately $15 million at 146 Walks held around the country compared to the $12.3 million raised last year, Chase said. “It makes smart business sense to have incentives. It is going to drive online registration and donations.”
Royal Caribbean International and Celebrity Cruises and Permobil, Inc., have joined Booz Allen Hamilton as national partners of the Walk.
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Certified ALS Center Named
After Curt and Shonda Schilling
The ALS Clinic at Lahey Clinic in Burlington, Mass., was named after Curt and Shonda Schilling in 2006 in recognition of all the Boston Red Sox pitcher and his wife do to increase awareness of ALS and raise funds for patient services, programs and research. Since 1992, the Schillings have raised more than $6 million for The ALS Association.
Less than one year later, the Curt and Shonda Schilling ALS Clinic has been certified by The Association as an ALS CenterSM. The clinic works closely with The Association’s Massachusetts Chapter and is one of 29 Centers of Excellence The Association's national office has certified across the country. This relationship is typical of the strong bond that exists between all centers and chapters elsewhere.
At the centers, people with ALS are seen by a multidisciplinary team of specialists during one office visit. Team members consult with each other and develop the most comprehensive treatment plan possible for patients.
“This is an exciting day for ALS patients throughout New England,” Shonda Schilling said. “Curt and I are truly grateful for the support that ALS patients and their families have shown us over the years; it is only fitting that we stand behind them and support an effort like this clinic.”
The unique aspects of this clinic are that patients are seen by many different medical specialists in one place at one time,” Schilling continued. “Families of the patients are no longer burdened with coordinating multiple visits in different locations.”
The ALS Clinic at Mayo Clinic in Jacksonville, Fla., Wisconsin/Froedtert Hospital ALS Clinic in Milwaukee, Wis., the ALS Clinic at Virginia Mason Medical Center, Wash., and the Providence ALS Center in Portland, Ore., were certified by The Association last year.
People with ALS Will Be Cheering
for Strikeouts at Lou Gehrig Night
The ALS community will win each time an opposing team’s batter strikes out at a Minor League Baseball home game at “Lou Gehrig Night” and “K’s for a Cure” on June 19, which is the birthday of the New York Yankees first baseman, who battled ALS.
The two separate but simultaneous promotions are a joint effort between The Association and the league to increase awareness about the disease and raise funds for services and programs The Association’s national network of chapters offer. All 160 Minor League Baseball teams are being encouraged to participate in the summer night’s promotions, part of the league’s Charity Partners Program (CPP).
This is the second time the two organizations have sponsored a league-wide promotion.
In 2003, full-page ads commemorating the 100th birthday of Gehrig, one of Major League Baseball’s greatest players before he was diagnosed with ALS in 1939, appeared in game programs between opening day and the end of the season. A specially prepared public service announcement by Bob Costas was shown on scoreboards.
Fans who participate in “K’s for a Cure Club” will receive prizes for pledging a minimum of $5 for every strikeout a hometown pitcher throws. The proceeds will then be donated to a local chapter. The program is similar to Boston Red Sox pitcher and ALS advocate Curt Schilling’s “Curt’s Pitch for ALS.” Curt Schilling and his wife Shonda Schilling have raised more than $6 million for The Association since 1992.
The Association joined CPP in 2004 and raised approximately $500,000 last year at stadiums across the nation. Additional funds are expected to be raised this year because of the promotions and because more teams are expected to host the Walk to Defeat ALS®, The Association’s national signature fundraiser.
“We’re building a stronger relationship all the time with the management of Minor League Baseball and all the teams,” said Nancy Venner, a community services director for The Association. Venner met with officials of Minor League Baseball at the Winter Baseball Meetings in Orlando, Fla., this past winter and made presentations inviting teams to become more involved.
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Clinical Trials Updated at Leadership Conference
By Roberta Friedman, Ph.D., Research Department Information Coordinator
It may be simplistic to think that a single compound will be able to make a difference in a complex disease such as ALS. That is why the TREAT ALS™ initiative funds tests of combinations of therapies.
Researchers at The ALS Association Leadership and Clinical Conference in Newport Beach, Calif., in late January provided progress reports and outlined their strategies toward definitive trials of new therapeutics. All are funded by The Association through its investigator initiated program, Association-initiated funding, and through TREAT ALS (Translational Research Advancing Therapy for ALS), its initiative to accelerate translation of research progress into clinical testing.
A virus is simply nature’s way to deliver a genetic signal, said Nicholas Boulis, M.D., of the Cleveland Clinic, who spoke about the rationale behind possible gene therapy for the disease. Gene therapy approaches have increased survival of mice that have a genetic mutation that produces symptoms of ALS.
However, the motor neurons in people are much longer. To meet that challenge, Boulis and his colleagues have combined aspects of different viruses into one construct. Ongoing collaboration with the biotech company, Ceregene, will seek to better target the therapy. Boulis also is collaborating with Clive Svendsen, Ph.D., at the University of Wisconsin, Madison, to modify helper cells derived from stem cells to increase growth molecule output, so these cells could support dying motor neurons.
Paul Gordon, M.D., of Columbia University, gave a progress report on a TREAT ALS trial that is testing two different combinations of therapeutics. The study is statistically designed to ask only for a good probability that one treatment is better than the other. Any treatment emerging from this would have to undergo more rigorous testing with a placebo to confirm it changes the course of the disease.
Seward Rutkove, M.D., of Beth Israel Deaconess in Boston, is investigating a new technique to measure muscle response. Jeremy Shefner, M.D., Ph.D., of New York Upstate spoke about a more established marker of muscle function. By carefully comparing these and other outcome measures in a TREAT ALS-funded clinical trial, The Association intends to provide the research community with a way to definitively test new candidate therapies for ALS.
To find currently funded projects, go to the blue research tab on the www.alsa.org home page, pull down Search Funded Research Projects and select the category TREAT ALS. There are currently 10 TREAT ALS clinical trials.
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