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Issue 12 September 2006 Newsletter Spotlight Shoes Are Hitting the Pavement for the 2006 Walk to D’Feet ALS   Two New TV Public Service Announcements Focus on the Walk and TREAT ALS Initiative   The ALS Association Will Help Open Up CHC Workplace Giving Door to Private Companies     ALSA Centers Are Reaching Out and Improving the Quality of Life   The ALS Association Opens Online Store   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. Shoes Are Hitting the Pavement for the 2006 Walk to D’Feet ALS By Stephanie Dufner, Communications Coordinator   Maggie, Daniel and Katie Imperato, the smiling children of Theresa Donovan Imperato, nurse coordinator at The ALS Association’s Greater New York Chapter, hold a banner in memory of Donovan Imperato’s father, Frank X. Donovan. Each year she organizes a team for the Long Island Walk. This month, supporters of The ALS Association will be donning sweat shirts and running gear to defeat Lou Gehrig’s disease during The Association’s Walk to D’Feet ALS®. The event, which allows The Association’s chapters to recruit new volunteers, work with corporate sponsors and donors and engage local communities, raises funds for nationally-driven research and local patient services programs and unites people in the fight against this disease. “The Walk is our number one fundraising vehicle,” said L. Ashton Chase, senior director for national signature events at The Association. During these Walks, individuals and teams walk more than three miles to support their local chapters during the spring and fall. For the past seven years, The Association has increased public awareness about Lou Gehrig’s disease and the people it has affected through the Walk program. Last year’s Walks raised more than $10 million nationwide. The Walk gives patients, their families and friends an effective way to fight against ALS. “It empowers them to battle the disease by raising funds for research and patient services,” Chase said. “And it allows families to give back for the many resources the chapters provide to them, such as respite care services, the use of augmentative communications devices and the use of a wheelchair.”  Chase plans to build on the success of this event as he sees myriad opportunities for the Walk’s continued growth on local, regional and national levels. Chapters’ alliances with local companies provide The Association with some fantastic opportunities to work closely with their communities. Highlights within the field include: the Georgia chapter’s affiliation with Pepsi; Booz Allen Hamilton’s significant partnership with the Washington D.C., Maryland and Virginia chapter; and the Greater New York chapter’s partnership with North Fork Bank. For regional growth, Chase sees opportunities by uniting existing corporate support of chapters’ Walk programs across markets. He cites the Shaw’s grocery store partnership with chapters in the northeastern section of the country.     Joan Argento, executive director of The ALS Association’s Connecticut Chapter, and Bridget and Leah Collier, daughters of Claire Collier, who has ALS and is seated in a wheelchair, cut the ribbon for the Walk to D’Feet ALS® at Sherwood Island in Westport, Conn., as Collier’s son Kieran helps on the far right. Chase and The Association’s Development Department are researching potential national corporate sponsorship opportunities for the Walk, and he is in the process of forming a strong relationship with the national Advocacy Department for their “I Took the Extra Step” campaign that provides chapters an easier means to gather supporters to become Association advocates. “By providing their names and emails at the Walks, people come forward and support future public policy issues,” Chase said. As part of the campaign, chapters make available letters that people can sign which urge their members of Congress to support key public policy issues like ALS research funding or legislation to create a National ALS Registry. Once walkers sign the letters, they receive an “I Took the Extra Step” sticker similar to the “I Voted” stickers people receive when they vote in federal and state elections. “The campaign empowers advocates and lets them know that there are other ways they can make a difference in the fight against ALS,” said Steve Gibson, The Association’s vice president for government relations and public affairs. To that end, this year the campaign also will encourage walkers to sign-up as advocates for The Association so that they can stay informed about ALS advocacy issues and participate in grassroots advocacy activities throughout the year. These advocates also can become volunteers for their local chapter, helping to make a difference on an ongoing basis.   The “I Took the Extra Step” campaign has produced results, not to mention stacks of letters for members of Congress, as the campaign generated a record 28,404 letters to Congress in 2005 – nearly three letters for every person in the United States that is expected to be diagnosed with ALS this year.  Not surprisingly, younger volunteers have also helped to increase the Walk’s visibility on local – and sometimes national – levels. Christian and Paul Carey Jr., two teenagers who live in Cincinnati, Ohio, have raised more than $150,000 during the past two years for the Southern and Central Ohio Chapter. The teens’ mother, Lorri, was diagnosed with ALS in 2004. For more information regarding the Walk, click here . TOP Two New TV Public Service Announcements Focus on the Walk and TREAT ALS Initiative   The Obermanns (L-R) Lauren, Eric, Marcia and Stuart appear in the new public service announcement “ALS Can Strike Anyone: Join the Walk to D’Feet ALS,” which was filmed at the family’s home in Huntsville, Ala. The ALS Association’s two new public service announcements which promote its successful Walk to D’Feet ALS® and aggressive drug discovery program are among the most emotionally powerful PSAs ever released by the organization in the fight against ALS. Both PSAs have been delivered to national television and cable networks and have begun airing on the Independent Film Channel and the Discovery Health Channel. Filmed in Alabama in June, the 20 and 30 second PSAs feature a young man who played in his high school’s marching band and enjoyed backpacking before he was diagnosed with ALS five years ago as a college freshman. In the PSA titled “The ALS Association, ALS Can Strike Anyone: Join the Walk to D’Feet ALS,” 24-year-old Eric Obermann, his parents and sister ask the public to join The Association’s Walk to D’Feet ALS and defeat ALS together. The verbal message is juxtaposed against contrasting images of how Obermann appeared as a teenager and his present condition, using a wheelchair and breathing with the assistance of a ventilator. The PSA was filmed in the family’s home.   In both PSAs, Eric Obermann communicates with the help of assistive communications technology. Toward the end of the Walk PSA, the computerized voice asks viewers to “Please register today for the Walk in your area.” Obermann, who last year told his story to the Senate Appropriations Committee Subcommittee on Labor, Health and Human Resources, also appears in “The ALS Association, TREAT ALS: Discovering New Drugs for Lou Gehrig’s Disease” along with The Association’s science director, Lucie Bruijn, Ph.D. Both appeal to the public for its support for The Association’s Translational Research Advancing Therapy for ALS (TREAT ALS), a program to accelerate drug discovery and clinical trials for new treatments to help people with ALS.    Lucie Bruijn, Ph.D., The ALS Association’s science director and vice president, and Eric Obermann, appear in the new public service announcement “TREAT ALS: Discovering New Drugs for Lou Gehrig’s Disease,” which was filmed at Open Biosystems in Huntsville, Ala. Headed by Bruijn, the new research initiative aims to move promising approaches more rapidly into the clinic for clinical trials and then patient treatment. In January, The Association announced it had funded the first three TREAT ALS proposals. The PSA was filmed in Huntsville in the laboratory of Huntsville Open Biosystems. “The new PSA’s are perhaps the finest The Association has made to date, and that is saying a lot because of the amount of praise past efforts have received,”  said Jeff Snyder, The Association’s vice president of communications. “What makes these PSAs so special is the amazing young man, Eric Obermann, who appears in both. He had the courage to go before the cameras and record for the world to see the impact ALS has had on his life and his family. Despite the toll it has taken, Eric, his family and Lucie Bruijn provide hope and inspiration to all who suffer from Lou Gehrig’s disease.” The public service announcements were produced by Los Angeles-based RNB Communications in conjunction with Irvine, Calif.-based Blackstone Media Group. "This was probably one of the most emotional experiences I've had in my ongoing relationship with The ALS Association," said Randy Bergman, RNB Communications' president. "Each time we work on these commercials with ALS patients and their families, I'm just so awestruck by their personal courage, as well as their patience in dealing with hot TV lights and long production days,” Bergman continued. “Working with Eric Obermann, so young and so determined to share his story with the world, made producing this PSA very special. I'll never forget him or his family. I am extremely proud that I can use my skills to help people learn about this awful disease and the work of The ALS Association." To view the PSAs, click on the following link, http://www.alsa.org/media/psa.cfm TOP The ALS Association Will Help Open Up CHC Workplace Giving  Door to Private Companies Realizing the potential for growth, Community Health Charities (CHC), joined by The ALS Association, will focus on attracting Fortune 500 companies to its workplace giving program, which began after Labor Day and up until now has consisted mainly of federal employees. The Association will play a pivotal role in bringing private organizations into the fold and has pledged to match CHC’s substantial amount of energy being expended to open up new campaigns in the private sector. “The ALS Association is very proud of its partnership with CHC,” said Gary A. Leo, The Association’s president and CEO. “We look forward to collaborating with CHC in attracting a new segment of the American workplace to this wonderful program.” One of the cornerstones of the new CHC direction is for participating private organizations to host a “health portal” for their employees to access the latest information about each of the voluntary health agencies listed on its workplace giving forms. The health portal will be launched by next summer. “This is the first organized, large scale effort to open up the program to private industry,” said Nancy Venner, The Association’s director of community services. “Those in The Association’s national office will be actively pursuing opportunities to introduce CHC to business leaders nation wide. Companies want their employees to feel good about giving.”     The ALS Association is at the forefront in the battle against Lou Gehrig’s disease, directing the most comprehensive research program ever organized to find a cure for the devastating disorder. Since the inception of the Combined Federal Campaign, millions of federal government workers across the nation have had an opportunity to donate a percentage of their paycheck to The Association and make a difference in the lives of people fighting ALS by filling out a simple form which they may pick up at health fairs and presentations and only takes a few minutes to complete. On the forms, employees have the option of choosing The Association as the non-profit of their choice and specifying what percentage of their paycheck should be earmarked to the national office of The Association or one of its 42 chapters. On CHC’s Combined Federal Campaign form, workers who want to earmark funds to The Association’s national organization would check code #0501. “There exists a definite opportunity here to grow the program with CHC,” Leo said. “These additional employees will stand side by side with their federal government counterparts in helping The Association fund research projects aimed at finding a cure for Lou Gehrig's disease and improving the quality of life for those with the disease and their caregivers.” For more information, contact Venner at (215) 723-5359 or at nancyv@alsa-national.org TOP   ALSA Centers Are Reaching Out and Improving the Quality of Life   Most of The ALS Association’s certified ALSA CentersSM, including the Dartmouth ALS Center , are located in medical centers such as the Dartmouth-Hitchcock Medical Center in New Hampshire . The approval in quick succession by The Association in the last few years of nine ALSA CentersSM, where people with ALS are seen by a multidisciplinary team of specialists, has translated into a savings of time, energy and reduced stress.   “We just cannot help ourselves,” said Sharon Matland, The Association's vice president of patient services. “The Patient Services Department of The ALS Association is committed to continuing to make sure that the Centers of Excellence are enhancing the quality of life for people living with the disease and their loved ones.” The Association’s gold standard of care in the management of ALS was established in 1989 when The Association certified its first Center, the Forbes Norris ALS Research Center in San Francisco. The Association has certified 27 centers to date. Several studies conducted in Europe within the last 10 years confirm that ALS patients who receive a wide range of care from a team of specialists at one location have a better chance of living longer and having an improved mental outlook.  During their visits to the centers, patients usually are examined by a neurologist, registered nurse/clinic coordinator, physical, occupational and respiratory therapists, dietitian, speech and language pathologist and a social worker. The entire visit lasts an average of two to four hours as compared to days and weeks of individual appointments. No questions go unanswered at the centers, and patients leave with a greater sense of how the teams will improve their quality of life, and what they will experience as the disease progresses so they can make informed decisions about the various treatment options.      TOP The ALS Association Opens Online Store By Stephanie Dufner, Communications Coordinator   Coming to The ALS Association: eCommerce! This fall, online shoppers will have the opportunity to purchase clothing and unique works of art when they visit The ALS Association’s new eStore, and in the process will help those living with ALS. The Association’s online store will feature a range of merchandise, including tee shirts, hooded sweatshirts, baseball caps, an inspirational calendar and jewelry. The eStore for the national office will open before October 1 to coincide with the holiday season. EStores operated by chapters of The Association will launch sometime after the national store opens at www.alsa.org. “The eStores will offer both chapters and the national office a means to increase revenue in the fight against ALS,” said Gary A. Leo, president and chief executive officer of The Association. “Other non profits successfully operate eStores, so we believe this venture will only benefit our organization and more importantly, those whom we serve.” BandMerch Inc., the online merchandising firm for contemporary musicians, is donating its services to The Association for this enterprise. The company will design, host and maintain the eStores and will create apparel and fulfill online orders from its Agoura Hills, Calif.-based office. The partnership between The Association and BandMerch made sense on a practical – and personal – level to the company’s president, Donn Delson, whose father passed away from ALS in 1999. “In my father’s honor, I have committed my music merchandising company, BandMerch, Inc., to designing and manufacturing Association-inspired apparel as a fundraising mechanism to which we will donate all profits,” Delson said. The eStores will produce additional monies that will go toward research to finding a cure for ALS and patient services that will help people with ALS and their families live with the disease. One of these patients, Peggy Chun, who lives in Hawaii and whose multi-hued artwork will be featured in an inspirational calendar in the online store, looks forward to teaming with The Association in the coming months. Although Chun is completely paralyzed and uses a respirator and a wheelchair, ALS has not diminished her ability to paint. An eye response computer system gives the artist the capability to paint with her eyes through the use of an onscreen keyboard.  "I am so proud to be a part of the new ALS Association eStore and pleased to show through my calendar the possibilities of a full life with ALS,” Chun acknowledged. The stores will add new items during the coming months. TOP Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.