THEexchange: Volume 1, Issue 7

One of the easiest ways for federal employees to help make a difference in the lives of people battling ALS, including military veterans, is by making a tax-deductible donation to The ALS Association through the Combined Federal Campaign (CFC) and Community Health Charities (CHC).

It only takes federal employees a few minutes at work to select ALSA as the non-profit of their choice on a simple form provided by employers. On the Combined Federal Campaign form, workers who want to earmark a percentage of their paycheck to ALSA’s national organization would check code #0501.

Studies have shown that nearly 60 percent of military veterans are at a greater risk at developing ALS than an average citizen.

“The ALS Association supports further research that is needed to learn more about the occurrence of ALS in military veterans,” said ALSA President and CEO Gary Leo. “This is the least we can do for the millions of men and women who are willing to make the ultimate sacrifice for their country.

“While we search for answers to ALS, we are equally focused on doing everything possible to improve living for the 30,000 Americans fighting the disease.”

The national offices of ALSA in Calabasas, Calif., and all of ALSA’s local chapters across the country, are participating in local, state and federal workplace fundraising campaigns, spearheaded by such organizations as CHC.

ALSA chapters strive to meet the needs of ALS patients and families by providing access to a wide variety of services including support groups, home visits, equipment loan and assistive technology programs, educational resources, and collaborations with clinics to ensure patients receive the highest level of care possible.

ALSA is a proud member of CHC, which conducts many campaigns in the private and public sector, and also is a founding member of CFC, which debuted in 1998. Donors can make contributions to the ALSA National Office or to any of the participating ALSA chapters.

Accenture, Aetna, Inc., American Airlines/American Eagle, American Express, Amerigroup Corporation, Ameristar Casinos, Amtrak, Boston Scientific Corporation, Caremark Rx, Inc., Cendant Mobility, CNA, C. R. Bard, Gannett Co., Inc., Gap, Inc., GMAC-RFC, Hewlett-Packard Company, Hospira, Imagistics, Keane, Inc., LP (Louisiana-Pacific), Miller Zell, Inc., NetJets, Pearson Education, Pitney Bowes, Inc., Raytheon, Sears, Roebuck & Company and Siemens Corporation.

Donations also can be made to ALSA through United Way’s Donor Option Program. United Way’s workplace campaign differs from CHC because non-healthcare organizations also are listed on forms. Simply designate ALSA by writing in the name or by specifying the ALSA chapter that should receive the donation.

For more information, contact ALSA Community Services Director Nancy Venner at (610) 941-6543 or at nancyv@alsa-national.org.

Veteran Affairs Locations Looking for A Few Good
Men and Women with ALS to Enlist in Clinical Trial

The Department of Veterans Affairs (VA) has an immediate need for military veterans with ALS who are interested in participating in the National Veterans Affairs Collaborative Amyotrophic Lateral Sclerosis (ALS) Clinical Safety and Tolerability Trial of Sodium Phenylbutyrate at six nationwide VA sites.

During the 20-week clinical trial, which began in April, all study participants will be given increasing doses of the oral medication sodium phenylbutyrate (NaPB). Participants in the clinical trial, jointly coordinated by the Massachusetts General Hospital Neurology Clinical Trials Unit and the Bedford VA, also are required to be at least 18 years of age and have no other neurological condition, and women who are able to have children must utilize birth control.

Although it is known that nerve cells die in the brains and spinal cords of patients who have ALS, the cause of the cell death is not well established. There is evidence that this cell death may be caused by altered changes in messenger RNA, made from DNA, the body’s genetic material. Drugs such as NaPB can improve the expression of genes, block how the motor nerve cells in ALS die, and may prove to be an effective therapy for ALS.

A study performed at the Edith Nourse Rogers Veterans Memorial Hospital in Bedford, Mass., demonstrated that NaPB improved the survival in mouse models that have symptoms similar to patients with ALS. The study was directed by doctors Robert J. Ferrante of the VA, along with Merit E. Cudkowicz of the Massachusetts General Hospital and the VA and Robert H. Brown Jr. from the Massachusetts General Hospital. The findings were reported in the Journal of Neurochemistry.

“Over the past 15 years, doctors Brown, Cudkowicz, and myself have been colleagues in developing a ‘bench to bedside’ approach to better characterize the disease pathogenesis and identify mechanisms to slow the neurodegenerative process, with the hope of finding a cure for ALS,” said Ferrante. “This approach has brought together a strong research program for basic and molecular neuroscience, a preclinical drug program using both in vitro and in vivo models of ALS, and a national clinical trial consortium of centers to conduct therapeutic trials in patients with ALS. They have combined their individual expertise in ALS into a unique translational initiative to help end this dreaded disease.”

Additional support for two non-VA sites is sponsored by the Muscular Dystrophy Association. The non-VA sites include Massachusetts General Hospital and Johns Hopkins University.

For a full list of study locations, please visit The ALS Association web site at www.alsa.org/patient/drug.cfm?id=629. The ALS Association national Web site contains up-to-date information on ALS-related clinical trials. Many trials still have open enrollment. For details, visit www.alsa.org/patient/drug.cfm.

Employee’s Initiative Results in His Company
Sponsoring Successful Fundraiser for ALSA

Motivated by the loss of his wife Nancy Irish last year to ALS, Osmond Irish, a volunteer at The ALS Association Northern New England Chapter decided to embark on a mission to increase ALS awareness and raise funds for five ALSA chapters in New England, so he approached his bosses at Olympia Sports, a major sporting goods chain in the region.

Irish, a devoted runner and shoe department sales associate for one of the company’s stores in Maine was adamant about introducing ALSA Northern New England Chapter Development Director Tonia Zampieri to his organization’s corporate executives in the hopes of developing a joint promotion everyone could support.

All parties concerned, including Olympia Sports, ALSA chapters in Northern New England, Massachusetts, Rhode Island, Connecticut, Upstate New York and Greater Philadelphia and Boston Red Sox pitcher Curt Schilling jumped on the bandwagon started by Irish, and the result was a highly successful in-store promotion this fall of “Curt’s Pitch for ALS” that is guaranteed to raise at least $85,000.

"The opportunity for Olympia Sports to support the ALS cause with the “Curt's Pitch for ALS” program and Curt Schilling has been exciting for all of us here at Olympia,” said Olympia Sports President Dick Coffey. “Everyone has enjoyed seeing what a success this program has been and we are all eager to see how the second wave of the promotion goes this fall.”

When all was said and done, Olympia Sports presented two sizeable checks to ALSA after checkout counter staff asked customers to make a donation in the amount of $1, $5 or $10. It was an offer hard to refuse because 11 x 7 posters of 2004 World Series hero Schilling were on display nearby. In exchange for their generosity, customers received one-of-a-kind Schilling baseball cards with information about ALS.

Olympia Sports is donating all of the proceeds to the ALSA chapters. In addition, the company, which operates 130 stores in New England, made a separate donation of $10,000 to the Northern New England Chapter.

“They have wonderful leadership at Olympia Sports and they actually have a staff person whose primary responsibility it is to make sure that these programs are run successfully,” said Zampieri, who helped design the baseball card. “They knew of our on-going relationship with Curt Schilling and his support and indicated if there was something we could do in regard to Curt Schilling that they would really like to do it.”

An additional benefit of the in-store promotion has been the referral of ALS patients to ALSA chapters.

“Our family remains involved with The ALS Association since our mother’s passing and hope to always be,” said Irish’s daughter, Diann Tonneson of Poland, Maine.

To locate Olympia Sports stores in the northeast United States, visit www.olympiasports.net. The website is expected to mention the promotion beginning Monday, September 12.

Pennsylvania Couple Raises Funds for People with ALS
by Recreating Tour de France on Bicycle Made for Two

This was not the first time Susan and Leonard Lodish have taken their tandem bike on a big spin for The ALS Association.

In August, the Wynnewood, Penn., couple recreated stages 2-7 of the Tour de France route, an 800-mile journey from Challans, France to Karlsruhe, Germany that that took 17 days to complete.

Since 1996, the Lodishes, each 62 years of age chronologically but appear much younger, have trekked hundreds of miles each summer to raise money for the ALSA Greater Philadelphia Chapter in the fight against ALS. This year’s ride raised more than $100,000, bringing their 10-year cumulative total to approximately $600,000.

“It’s really fun to go into most of the small towns on the tour and see how they welcomed the Tour,” wrote Leonard Lodish in his daily log. “It gives us a chance to imagine that we really are part of the tour and makes us feel welcomed and appreciated.”

The Lodishes began their annual ride in 1996 after Leonard’s cousin, Dr. Jules Lodish of Bethesda, Maryland, was diagnosed with ALS. That first year they rode from California to Delaware. Since then they have challenged themselves by riding their tandem bike along the East and West coasts of the United States, across the Midwest and New England, through Scandinavia, Argentina and Uruguay, Germany Austria and Hungary and Australia. Last year’s ride from Wuhan to Beijing, China raised a record $90,000.

This determined couple carried everything they needed for their three-week journey in their bike’s front and rear saddlebags and a single backpack. Their equipment included both a digital camera and a laptop computer, which allowed them to e-mail regular “Notes from the Road” to their supporters. The Lodishes funded their trip themselves so that all contributions from their supporters could go directly toward support and services for ALS patients and their families, and to researchers who are trying to discover a cure of this devastating disease.

“I am amazed and inspired by the scope of Susan and Len's commitment to their ride,” said Ellyn Phillips, president of the ALSA Greater Philadelphia Chapter. “They do everything from recruiting donors to fighting the elements, to carrying the ALS banner for every mile they pedal. The ride is grueling, yet they handle it like the champions that they are.”

Big Things Come in Small Packages

They may not stand as tall as us, however, children more than hold their own at the Walk to D’Feet ALS®, the ALS Association’s national signature fundraising event, in such areas as compassion for people with ALS and fundraising. Last year in memory of her Grandma Bunny, 13-year-old Jamie Burke began making “Knots of Love” blankets for the Walk to D’Feet ALS sponsored by the ALSA DC/MD/VA Chapter. At the 2004 Walk in the District of Columbia, Burke randomly distributed the blankets to people with ALS including Michael Jack. In 2005, she would like to make a blanket for each team member with ALS.

Christian Carey, 13, and brother Paul Carey, 14, raised more than $80,000 in 2004 at the ALSA Western Ohio Chapter Walk to D’Feet ALS by forming the 550-person strong Kids4Cure team. Their goal this year is to raise $100,000. The duo was honored by the Cincinnati Reds baseball team earlier this season and participated in the 2005 National Advocacy Day and Public Conference in Washington, D.C., last May. For more information about how to support and participate in the Walk, held in 150 cities in the fall and spring, 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.

Nation’s Heroes Also Can Benefit from Workplace Giving Program

Veteran Affairs Locations Looking for A Few Good Men and Women with ALS to Enlist in Clinical Trial

Employee’s Initiative Results in His Company Sponsoring Successful Fundraiser for ALSA

Pennsylvania Couple Raises Funds for People with ALS by Recreating Tour de France on Bicycle Made for Two

Big Things Come in Small Packages

Nation’s Heroes Also Can Benefit
from Workplace Giving Program

Veteran Affairs Locations Looking for A Few Good
Men and Women with ALS to Enlist in Clinical Trial

Employee’s Initiative Results in His Company
Sponsoring Successful Fundraiser for ALSA

Pennsylvania Couple Raises Funds for People with ALS
by Recreating Tour de France on Bicycle Made for Two