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Volume 1, Issue 6
August 2005

Newsletter Spotlight

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 ALS Association is dedicated to finding a cure for and improve living with Lou Gehrig’s disease. Click here to contact your local chapter.


ALSA Puts its Best Feet Forward

ALSA is cranking up its inspiring and festive national signature fundraising event machine again, as the sixth annual Walk to D’Feet ALS® in support of local patient services and nationally directed research continues this fall after a successful spring beginning.

 Walk logo small

ALS patients, their families and friends will be walking in close to 150 cities this year, resuming in earnest beginning in August with Walks scheduled in Minnesota, Upstate New York, Indiana and Kansas. In September, October and November, the event, orchestrated and choreographed by ALSA’s national network of chapters and manned by many volunteers, will take place another 115 times. There were 22 Walks last spring. Overall, 75% of the Walks are held in September and October.

The Walk has raised nearly $30 million since it was initiated in 2000. This year, ALSA expects 100,000 people to participate and raise approximately $10 million. In 2004, 90,000 walkers nationwide raised $9.1 million.

Prior to a Walk , walkers, including family members who have flown in from across the country, usually form teams in honor of a loved one with ALS. Each team picks a captain who initiates a letter-writing campaign to family and friends asking for donations. Persons living with ALS, their friends and families as well as the corporate community, then gather for a one to three-mile non-competitive walk.

walkers
Typical scenes at the Walk to D’Feet ALS® include families walking along a peaceful trail to raise awareness and funds for research and patient care.

In the United States, about 30,000 people are currently afflicted by ALS (amyotrophic lateral sclerosis), commonly referred to as Lou Gehrig’s disease, with one person diagnosed with the disease every 15 minutes. There is currently no cure for ALS and the average life expectancy of an ALS patient is two to five years from the time of diagnosis.

For more information about how to support and participate in the Walk , contact the director of the event, Pat Freiberg, at 888-WALK ALS or at walk@alsa-national.org. For a comprehensive list of the Walk schedule, click here.


Daytime Drama Star Auditioned for Big ALSA Part
After Family Member was Diagnosed with ALS

As if there was not enough melodrama in the life of Kate Linder, star of the number one rated CBS daytime soap opera hit, “The Young and the Restless,” she decided to take on her most important role last winter when her brother-in-law, Scott, was diagnosed with ALS. Linder, approached ALSA and has become one of the organization’s primary spokespersons.

Linder headshot new 
Actress Kate Linder has become an important spokesperson for ALSA, including appearing in a Walk to D’Feet ALS® PSA and at the event itself.

Her latest venture on behalf of ALSA is ALSA’s new public service announcement that increases awareness of ALS and promotes the organization’s most important annual fundraising and public awareness event, The Walk to D’Feet ALS®. The new PSA builds on the momentum of “Keep Hope Alive,” ALSA’s most recent PSA campaign.

The 30 second PSA features Linder and Scott, and is beginning to receive air time on broadcast television and cable networks.

Linder, who plays confidante and housekeeper Esther Valentine on the show, spearheads ALSA’s Kate’s Club campaign with an array of activities including networking with fellow actors, fans and volunteers to make everyone more aware of the disease. 

“If this public service announcement approaches or surpasses the success of ALSA’s ‘Keep Hope Alive,’ and I have every reason to believe that it will, it will bring immeasurable joy to me and the entire ALS community,” said Linder. “The success of the spot also should not be measured only in terms of total viewership, but also by how many people actually decide to support this very important cause with either a contribution and/or their time as a volunteer.” 

In the 2005 season, ALSA’s chapters are staging close to 150 Walks across the United States to raise funds for serving patients and families with ALS. The Walks raised more than $9 million in 2004.

Click here to view the Walk PSA


ALSA PSA Viewership Numbers are Stunning

The ALS Association continues to score one touchdown after the other with its public service announcement that features Dr. Richard Olney, the world renown University of California, San Francisco ALS neurologist who ironically was diagnosed with ALS.

Dr. Olney
In a scene from the ALSA public service announcement, Dr. Richard Olney asks viewers to support ALSA and help keep research, patient care and hope alive.

Nearly four times as many viewers have watched the ALS awareness raising “Keep Hope Alive” than watched the last Super Bowl, and there is every indication that these numbers will continue to grow.

According to the latest figures provided by Nielsen Media Research, the PSA is fast approaching a viewership of 300 million people, compared to about 80 million people who viewed the NFL’s classic championship game. The estimated population of the United States is 295 million people.

There also are other impressive comparisons. “Keep Hope Alive" has been seen by more people than tuned in for each episode of such popular shows as “American Idol” and “CSI.”

The PSA, which also has aired on CNN and CNN Headline News and FOX, won two Telly Awards, a premier achievement which honors outstanding local, regional and cable TV commercials as well as the finest video and film productions.

The veteran actor who appeared with Olney in the 30 second spot, which has received the bulk of its air time on the CBS Network, is proud of his role in possibly one of the most successful non-profit PSAs in recent years; however achieving a statistical record was not what motivated him to become involved.

PSA set2 
Actor Alan Rosenberg and makeup artist
on the set of ALSA public service announcement.

“I’ve known film directors and producers who have put a lot of stock in being the highest grossing movie ever,” said Alan Rosenberg, a familiar face on television who played the ALS-stricken lawyer Alvin Masterson on the CBS show “The Guardian.” “The stakes here are much different. The reason you do something like this is so that people see it, you can raise awareness and raise money. So, very practically, if more than 200 million people have seen it, we have raised that much more awareness, and we have that more potential to raise money for awareness. And that is very gratifying.”

Rosenberg, an ALSA spokesperson, came away from the PSA experience with even more admiration for Olney and ALS patients than he did before.

“I knew his story and had seen his footage,” said Rosenberg. “His story is incredibly inspiring. It’s much different than sharing the screen with someone you admire for their work as an actor. He dedicated his life to helping people who were afflicted with the disease, and that is the sad irony.”

Click here to view the latest award-winning PSA.  


Artist Helping ALSA by Selling
Steel Baseball Players Team

An ALS patient and a game-winning home run inspired multimedia artist Bill Arms to sculpt a team of steel baseball players that are for sale and will benefit the ALSA New Mexico Chapter.

batter sculpture
The “Baseball Batter” was inspired by a grand slam home run hit during a Major League Baseball playoff game.

When Arms was taken to his first Major League Baseball game in the late 1980s by his friend, Paul Speyers, who has since passed away from ALS, a game-winning grand slam hit by a Seattle Mariner against the New York Yankees during a playoff game ignited a creative brainstorm. The now avid 65-year-old baseball fan could hardly wait to return to his studio to turn a vision into reality.

Arms’ 14 life-size, 300-pound, steel-sculptured players not only capture the excitement of the grand slam but also other more subtle nuances of the game in 3-D poses including such movements as the full swing, fielders catching a long fly ball and pitchers as they deliver an inside curveball.

Each sculpture, said Arms, takes four weeks to complete and rarely are the 14 players together at the same time because as soon as he finishes a sculpture a buyer makes a visit.

“Before I knew it, a lawyer for the Johnny Carson bought two of them and immediately put them right in front of a Picasso and Moreau,” Arms said of the original sculptures made in the late 1980s.

Pitcher sculpture
The “Baseball Pitcher” and all of Bill Arms’ “Grand Slam” collection sculptures are made of stainless steel and bronze.

The 14 sculptures, aptly named “Grand Slam,” resided at Ted Turner Field, home of the Atlanta Braves, for years. When the Braves decided to remodel their stadium this year, the public art display was returned to Arms, who then contacted the Albuquerque Isotopes, a Triple A affiliate of the Florida Marlins, who were more than happy to display the sculptures at their Isotopes Park stadium. The ALSA New Mexico Chapter will receive 20% of the proceeds from the sale of the sculptures, which are priced at $6,000 each.

The chapter is more than familiar with Arms who participates from time to time in the ALSA national signature event, the Walk to D’Feet ALS® and other activities.

"We have known Bill for several years and appreciate his thoughtful, generous, loving spirit. He is a wonderful artist, and we greatly appreciate his willingness to share his talents, which will promote awareness and hopefully bring in needed funds to help serve our PALS,” said ALSA New Mexico Chapter Executive Director Terie Baker.

For more information about the sculptures, call Arms at (505) 758-3039.

 

Questions About Changing Medicare
Benefits Answered at New Web Site

Those who want to learn more about which Medicare benefits they are eligible for can now access Medicare Rights Center (MRC) online by visiting ALSA’s web site at www.alsa.org/resources.

The MRC website site features Medicare Interactive at www.medicareinteractive.org/alsa, an easy-to-understand information tool that addresses healthcare benefits, rights and options of older adults and people with disabilities.

This web site resource includes state-specific information (such as information about state prescription drug programs and how they will coordinate with the new Medicare drug benefit) and is designed for people with all levels of Medicare knowledge and all levels of Internet-savvy.

Medicare Interactive will respond to such questions about the new Medicare prescription drug benefit that takes effect in January 2006 as: How does it work? Do I need to sign up?  Will the benefit cover my medications? 

A second very useful tool offered by the Medicare Rights Center is “Dear Marci,” a weekly e-newsletter designed to keep people in the loop about health care benefits, rights and options for people with Medicare. The newsletter provides important information about when and where to apply for the new Medicare drug benefit, who is eligible for extra assistance, and much more. 

MRC is the largest independent source of health care information and assistance for people with Medicare. A non-profit founded in 1989, MRC helps older adults and people with disabilities receive affordable health care.

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