Vision of Founders Still Inspires as ALSA Marks 20th Anniversary
This year marks its 20th anniversary as an organization, and already it is embarking on a new era of major progress for the future, not resting on its past laurels.
“There is every reason to believe that the vision brought forth by the founders of this organization will propel us to even greater heights in a shorter timeframe,” said ALSA President and CEO Gary Leo. “ALSA and its many partners will work together with a sense of urgency to improve the life of people living with ALS and to find a cure.”
This sense of urgency is reflected in ALSA’s proactive New Drug Discovery Research Initiative. Announced recently, this bold new step in research represents a long-term commitment on the part of ALSA toward discovering drugs that will prevent, stop or significantly slow down the progression of ALS. ALSA set the gold standard in ALS research by instituting the ALSA-initiated research program in the mid-1990s, and is well on its way to rewriting the ALS research books again.
ALSA was created in 1985 when the two major ALS organizations at the time, the Sherman Oaks, Calif.-based ALS Society of America and New York City-based National ALS Foundation decided to merge.
“We all realized that in order to accomplish what both organizations wanted to accomplish, we could do it better, more quickly and more effectively if we became one organization,” recalled Allen Finkelstein, an attorney who incorporated the new entity and is the chairman of ALSA’s National Board of Trustees. “The rest is history.”
ALSA’s achievements in the last 20 years range from the creation of a national network of ALSA chapters which offer comprehensive services and program for ALS patients and the establishment of multidisciplinary ALSA Centers to the waiver of the 24-month Medicare waiting period and automatic social security benefits for people diagnosed with ALS, the direct result of ALSA Advocacy Department lobbying efforts in the nation’s Capitol. In addition, ALSA awarded nearly $27 million to fund research, and ALSA’s signature fundraising event, the Walk to D’Feet ALS®, now in its sixth year, continues to rapidly grow.
“It is my sincere hope and desire that we will all be there for the final event that closes the door on Lou Gehrig’s disease and relegates it to a footnote in medical history,” said Finkelstein. “If we can accomplish all this in our lifetime that would demonstrate the foresight of our founders and the ability of good people working diligently together to accomplish the impossible dream.”
ALSA’s Walk to D’Feet ALS Just Keeps Growing
If your favorite retailer’s inventory of walking shoes, sweatshirts and pants is dwindling, blame it on the thousands of ALS patients, their families and friends who are taking the steps to participate in the Walk to D’Feet ALS®, the growing signature fundraising event of The ALS Association held across the nation during the spring and fall.
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Walkers in the Northwest start off a Walk with enthusiasm.
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Before the Walks, participants form teams in honor or memory of someone with ALS, and make a pledge of financial support to one of ALSA’s national network of chapters, which sponsor the individual Walks. Donations help provide comprehensive patient services and programs at the local level. They also help finance research for finding a cure for the disease and better treatments to improve the quality of life. A typical Walk is 3.1 miles in length.
In April 2005, the first 14 of an expected 140 Walks are slated to get underway. Last year, more than 80,000 walkers raised nearly $8.7 million at 135 Walks held in 133 cities.
“There has been tremendous growth between 2003 and 2004,” said Pat Freiberg, ALSA’s National Signature Event director. “Hopefully, we will continue to equal or surpass that during this, the sixth year of the event.”
In 2004, a number of chapters, including one brand-new chapter, far exceeded Walk revenue raised in 2003. The Upstate New York, Central Tennessee, South Texas and Oregon and Southwest Washington chapters also at least doubled the number of Walks they held. For instance, the new Upstate New York chapter multiplied its revenue by more than seven times. “They put a lot of time and effort into it,” said Freiberg.
Efforts to attract even more people to the Walk have been bolstered by an online registration system provided by 28 chapters and, for the first time, a print ad which will give the event the most exposure it has ever received.
“A lot of people like to do business online,” said Freiberg. “This very robust system cuts down on the amount of paperwork in the chapter office; however, it does not replace the personal interaction between chapters, their patients and caregivers. The system also gives staff and volunteers more time to develop and coordinate better Walks.”
For more information about the Walk to D’Feet ALS®, call Freiberg at 1-888-WALK-ALS or visit www.alsa.org/walk.
Webcast Features Research into ALS and other Degenerative Diseases
A unique look at the common threads that link ALS and other neurodegenerative diseases is explored in a webcast that focuses on the research underway by many biotechnology companies to provide new answers and pathways to treatments and cures.
"The Neurodegenerative Disease Market: Opportunities to Solve the Mysteries of Alzheimer's, Parkinson's, ALS, and Other Devastating Illnesses” webcasts feature four noted experts who describe the common underlying mechanisms of Alzheimer's, Parkinson's, ALS, MS, and others.
ALSA Science Director Lucie Bruijn is featured on the ALS webcast, produced by Killen & Associates, a highly-respected research firm based in Palo Alto, CA.
The Killen webcasts look at the possibility of following a shorter path to finding cures for ALS and other neurodegenerative diseases by opening up a multi-billion dollar marketplace for innovative biotech and pharmaceutical companies.
Firms that make breakthroughs in one disease area may have the technology necessary to open doors to other neurodegenerative disease markets as well. The experts’ insight creates a foundation for envisioning how biotech and pharmaceutical firms can shorten the time to find cures by leveraging the common disease elements.
To view a multimedia trailer of the series, visit http://www.killen.com/ndd/trailer. The series is available for general viewing at http://www.killen.com/ndd. This webcast will be available for 18 months at this site.
For more information on the webcast series, contact Michael Killen of Killen & Associates at (650) 327-2312 or michael@killen.com. The company’s website is located at www.killen.com.
For information about ALSA’s research program, visit www.alsa.org/research.
Washingtonian Magazine Honors ALSA Volunteer
Joan Deye is a private person, and when she found out her personal mission to help people with ALS was going to become public, she was reluctant at first. But for the sake of her cause, she’s willing to be exposed.
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Joan Deye was recognized for making a difference in the lives of Washington, DC area patients
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Washingtonian Magazine elected Joan as one of its 2004 Washingtonians of the Year, with a story in the January issue and coverage on their web site (http://www.washingtonian.com/people/WOY/04.html).
“I was very proud to receive this award, and I would do anything to get more recognition for people with ALS, but I have never needed acknowledgement for my work,” says Deye, who works with the DC/MD/VA chapter of ALSA and is on their Board of Directors.
Joan is one of the many volunteers that work with ALSA’s chapters across the nation, some giving of their time, some of their talent, some of their caring. They help out administratively, lead support groups, campaign to advance advocacy efforts, organize Walks to D’Feet ALS, or give respite care for family caregivers.
Many help because they’ve been affected by ALS, perhaps through a family member or friend, and they are determined to make life a little better for those going through a similar experience. Most are not in it for the fame, and feel like Joan does, that their reasons for helping are their own, yet compelling nonetheless.
The ALS Association is a stronger group for the efforts of people like Joan Deye and her counterparts, and ALSA thanks them all for their dedication and efforts in improving living with ALS.
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