The ALSA New Mexico Partner

The ALS Association Introduces ‘ALS Across America’ Campaign During National ALS Awareness Month in May

admin — Thu, 15 May 2008 07:14:34 +0000

by Gary Wosk, Staff Writer

In honor of the courageous people fighting ALS (amyotrophic lateral sclerosis) and their caregivers, The ALS Association has launched the “ALS Across America” campaign for National ALS Awareness Month in May.

The “ALS Across America” campaign shines the spotlight on men and women from all walks of life who despite having ALS, or the fact that they are taking care of someone with this disease, 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.”

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, degenerative neuromuscular disease affects 30,000 Americans annually in this country. The average survival rate is two to five years from the time of diagnosis.

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Actress Angela Lansbury Stars in New ‘Cure ALS’ PSA Campaign

admin — Fri, 18 Apr 2008 06:24:04 +0000

Distinguished actress Angela Lansbury, famous for her work on Broadway, films and television, including the extraordinary long running hit series, “Murder She Wrote,” stars in a series of radio and television public service announcements for The ALS Association to launch the new “Cure ALS” campaign.

(L) Dr. Lucie Bruijn, science director and vice president of The ALS Association and actress Angela Lansbury are interviewed by “Today” show host Al Roker about kicking off the Cure ALS PSA campaign.

The PSAs use powerful emotional and dramatic imagery to emphasize the importance of global research for ALS (amyotrophic lateral sclerosis), commonly referred to as Lou Gehrig’s Disease. In addition to the PSAs, Lansbury appears in the three-minute feature “The Cure ALS Campaign: Behind the Scenes with Angela Lansbury.”

Lansbury decided to become involved with The Association to honor her sister, Isolde Denham, who passed away from ALS in 1987 and was married to actor Peter Ustinov. The actress is committed to stop the “bullet” that is aimed at other people who are living with the progressive, neurodegenerative muscular disease. She was particularly impressed by the organization’s aggressive, global and cutting-edge research program and the sense of urgency expressed by The Association’s top leaders in finding a cure for ALS. (more…)

Racin’ For a Cure

admin — Thu, 27 Mar 2008 13:34:15 +0000

Scott Pfeiffer (r), with NASCAR driver Derek Thorn

NASCAR Team Partners with The ALS Association to Raise Awareness, Funding in Fight Against Lou Gehrig’s Disease

By Dan Gordon

For Scott Pfeiffer, 2007 started out like a dream.

42-year-old Fort Atkinson, Wisc., resident, was at the center of the sport he loved, serving as the agent for NASCAR driver Derek Thorn. Pfeiffer, a lifelong NASCAR fan who himself ran midget and sprint cars when he was younger, saw his 21-year-old client burst onto the scene in his first season, finishing fifth overall and as runner-up for the Pat Bourdow Memorial Rookie of the Year award in the 2007 ASA Late Model Series Challenge Division.

But in May, the dream took an unexpected turn. Pfeiffer was told by his doctor that the muscle weakness and speech impairment he was experiencing were early signs of a progressive neurodegenerative disease called amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease.

Pfeiffer’s initial reaction to the news was one of bewilderment.

“When the doctor said, ‘You have ALS,’ I looked at him and shrugged my shoulders as if to say, ‘What’s that?’” recalls Pfeiffer, who is married with two children, ages 5 and 2. “He said, ‘Motor-neuron disease,’ and I had the same reaction. Then he said, ‘Lou Gehrig’s Disease.’ I knew that wasn’t a good thing, but I still didn’t know anything about it.” (more…)

Senate Committee Passes the ALS Registry Act!!!

admin — Wed, 14 Nov 2007 16:13:01 +0000

Washington, DC - Earlier today, the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously passed the ALS Registry Act (S. 1382) by a bipartisan voice vote! This is yet another victory for advocates across the country and comes just less than a month after the House of Representatives passed their version of the bill by a 411-3 vote. The bill is now cleared for consideration by the full Senate, nearly the final stage of the legislative process!

The Committee’s action is a testament to the effectiveness of our strategic outreach, as some Members of the Committee have previously blocked action on many other disease-specific health bills. In order to move the bill through the Committee as quickly as possible, the Advocacy Department launched a coordinated and focused campaign that included broad outreach to the entire Senate, such as the first-ever national “Call for a Cure.” Our goal was to obtain 60 cosponsors, a level of support that could not be ignored by the Committee. We are pleased to say that advocates had even more success, as 66 Senators had cosponsored the bill prior to today’s vote!

We targeted individual Committee Members, working with both grassroots and grasstops advocates to build support on the Committee and commitments from Members to vote for the ALS Registry Act. We worked behind the scenes with the bill sponsors, Harry Reid (D-NV) and John Warner (R-VA), as well as with the Committee staff and the staff of individual Senators to address specific concerns and secure bipartisan cooperation. And we also joined with Senators Reid and Warner to provide a “walk through” briefing specifically for each Committee Member’s staff. In the end, the combined efforts of the entire ALS community produced results this morning: unanimous bipartisan support to pass the bill and take one more step closer to enacting the ALS Registry Act!! (more…)

AIG and the Albuquerque Isotopes have partnered to support the ALS Association of New Mexico

admin — Mon, 29 Oct 2007 18:31:27 +0000

AIG and the Albuquerque Isotopes have partnered to support the ALS Association of New Mexico by donating $25.00 for every double play the Isotopes make during the 2007 season. Thank you AIG and Albuquerque Isotopes for your support!! Total amount donated for the 2007 season: $2,500.00!

Executive Director Terie Baker receiving the $2,500 check during ALS Night at Isotopes Park.

Maas BiolAB Awarded $2.1 Million SBIR for Cyclosporin ALS Treatment

admin — Tue, 23 Oct 2007 20:12:09 +0000

Albuquerque, N.M.–(BUSINESS WIRE)–Maas BiolAB received a Small Business Innovation Research (SBIR) grant of $2.1 million over three years from the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) for the translational project “Intrathecal Cyclosporin for the Treatment of Amyotrophic Lateral Sclerosis (ALS).”

Cyclosporin, a direct mitochondrial neuroprotectant, substantially extends life in ALS mice. Mitogard®, the only cyclosporin formula designed for cerebrospinal fluid administration, was developed because systemic cyclosporin does not easily reach the brain and spinal cord. Dose escalation toxicology and pharmacokinetics safety studies of intrathecal Mitogard® will be performed under Good Laboratory Practices (GLP) by Northern Biomedical Research, enabling Investigational New Drug (IND) approval for ALS clinical trials.

ALS or Lou Gehrig’s disease causes progressive death of motor neurons in the brain and spine leading to paralysis and death usually within three years. There are as many as 30,000 Americans with ALS with 5,000 dying each year. (more…)

House of Representatives Passes the ALS Registry Act

admin — Tue, 16 Oct 2007 18:05:27 +0000

Washington, DC - The Advocacy Department is excited to let you know that on Tuesday, October 16, 2007, the House of Representatives passed the ALS Registry Act by a vote of 411-3! This is a tremendous victory for people with ALS and their families across the country as the bill would authorize $89 million over five years to establish the first ever national ALS patient registry at the Centers for Disease Control and Prevention.

We would like to thank the entire ALS community for their relentless outreach to Congress that led to today’s victory. It goes without saying that your Representatives have heard our message loud and clear - and they have responded!

In fact, during the debate, several Representatives took to the floor to praise the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. They spoke about the individuals and families they met during The ALS Association’s Advocacy Day in Washington as well as those they have met back home in their districts. It is clear that the outreach of advocates at events like Advocacy Day demonstrated to Congress why the ALS Registry Act is so important to the fight for a treatment and cure.

Video footage of Congressman Eliot Engel’s remarks on the House floor is available here and the text of the debate that preceded the vote is available here.

As Members of Congress have repeatedly noted, people with ALS have a powerful story to tell and that is why the ALS Registry Act has passed the House of Representatives: Your stories, your experiences - and your outreach - make a difference! (more…)

HOUSE SUBCOMMITTEE PASSES ALS REGISTRY ACT

admin — Thu, 19 Jul 2007 18:11:19 +0000

Washington, DC - We are extremely pleased to report that on July 19, 2007, the House Energy and Commerce Committee Subcommittee on Health unanimously passed the ALS Registry Act (HR 2295). The bill is now cleared to move forward in the House and next will head to the full Energy and Commerce Committee. This is a tremendous victory and is one of the most critical steps in the legislative process, as most bills introduced in Congress never make it “through Subcommittee.”

During the session, Subcommittee Members repeatedly stressed the importance of establishing a national ALS registry in the fight for a treatment and cure and spoke of the personal connections many have developed with family and constituents who have been touched by the disease. Members also praised the efforts of The ALS Association and advocates for helping to lead the fight for the bill and for our continued outreach to Congress over the past two years. Since the ALS Registry Act did not specify funding levels for the registry beyond Fiscal Year 2008, the Subcommittee also agreed to authorize $16 million per year in FY 2009-2012 in addition to $25 million in Fiscal Year 2008.

The Subcommittee’s action reflects the strong bipartisan support generated by ALS Association Chapters and advocates from across the country. A total of 261 House Members - well over a majority - have signed on in support of the bill! The Advocacy Department will continue to work closely with the Committee as the bill moves forward. (more…)

Buy Popular ‘Bright Eyes’ Single Now at iTunes For Only 99¢ and Help The ALS Association

admin — Fri, 01 Jun 2007 18:25:24 +0000

Excerpts courtesy of Gary Wosk, Staff Writer, The ALS Association

Andy Eddowes and his daughter Rachel in earlier days.

Boston artist and psychologist Anna Huckabee Tull has been commissioned to write and record more than 100 songs, unique and incredible journeys about people marking special occasions.

Tull, with six national CD releases to her credit, felt compelled to ask her husband’s cousin, retired Navy captain Andy Eddowes, if he would be interested in expressing his feelings about his young daughter, Rachel, through Tull’s voice - he has bulbar-onset ALS and can no longer speak. She had witnessed how the family was struggling with discussing ALS with Eddowes’ daughter.

“We knew that she wrote and performed her songs and that she was quite good at it, so when she emailed her proposal to me, I immediately agreed,” said Eddowes, who served in the military for 22 years. “She really outdid herself with ‘Bright Eyes.’ We all love it. It’s wonderful.”

Eddowes hopes the song will mean more to his daughter as the years go by.

“My father passed away when I was 32, so I had a chance to get to know him as an adult. I really enjoyed that experience,” he said. “Given that my life expectancy is short, I would like to leave as much of me behind as possible. This song will be important part of that.”

Note: You must have iTunes downloaded installed on your machine. Click here for a free iTunes software download.

Purchase the song from iTunes

Read full story at The ALS Association National Site

DOMENICI MEETS WITH ALS ADVOCATES

admin — Wed, 16 May 2007 18:15:08 +0000

WASHINGTON D.C. - U.S. Senator Pete Domenici met today with representatives of the New Mexico chapter of the ALS Association to discuss legislative issues relevant to awareness and treatment of ALS, which is commonly referred to as Lou Gehrig’s disease.

Renie Garciay Griego and David Meister, both of Albuquerque, met with Domenici in his Washington D.C. office. The issues they discussed included upcoming legislation pertaining to a national ALS registry, as well as DOD funding for further research concerning the disease.

ALS affects nerve cells and pathways in the brain and spinal cord and afflicts more than 5,600 people per year. The ALS Association advocates to increase public and private support of research concerning the disease, as well as health care reforms that respond to the demands that are imposed on those who have the disease.