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Volume 1, Issue 4
Connecting each outreach effort will be the spirit of “The Flame of Hope,” displayed in ALSA’s new National ALS Awareness Month advertisement, and reinforced by ALSA’s new public service announcement, “Keep Hope Alive,” airing on major television networks. The main event of National ALS Awareness Month will be ALSA’s National ALS Advocacy Day and Public Policy Conference, scheduled in Washington, D.C., from May 9 to May 11. The theme of the eighth annual event is “Lighting the Way for a Treatment and Cure.” In recognition of ALS National Awareness Month, ALSA chapters are gathering proclamations from governors. ALSA Chapters also are sponsoring the Walk to D’Feet ALS, ALSA’s national signature fundraising event – there will even be candlelight Walks – and fundraiser golf tournaments. In addition, Minor League Baseball, which named ALSA a member of its Charity Partners Program for the second consecutive year, is recognizing the importance of the month by holding special stadium ceremonies. “ALS National Awareness Month and the 2005 National ALS Advocacy Day and Public Policy Conference are a time when the voice of the entire ALS community will be heard,” said ALSA president and CEO Advocates from ALSA chapters, people with ALS and their loved ones will join in the Capitol for the eighth annual National ALS Advocacy Day and Public Policy Conference. Highlights of the three day event include “The Second Annual Candlelight Vigil,” and meeting with legislators on National ALS Advocacy Day. The theme of this year’s event is “Lighting the Way for a Treatment and Cure.” Shonda Schilling, wife of Boston Red Sox pitcher Curt Schilling, actress Kate Linder from “The Young and the Restless,” and actor Alan Rosenberg will be among those who participate in ceremonies and meetings. National ALS Advocacy Day: A Personal Story
Richard Harris knows what many of our readers know. He knows how it feels to watch the love of his life become a prisoner in her own body. He knows the powerlessness of being unable to protect his children from agonizing loss. He has lived through the long and difficult process of trying to get a diagnosis, of seeking answers to unanswerable questions, of looking for help from systems designed for high-visibility diseases, like cancer and heart disease, that impact large numbers of people. He has fought – and almost lost – the battle to take care of himself while trying to meet the enormous caregiving needs of a wife with ALS. Richard wants decision-makers on Capitol Hill to know what this feels like, too. The ALS Association’s (ALSA) National ALS Advocacy Day is coming up in May, and “I’ll do whatever I can,” says the Brookeville, MD resident. “I’m not going to stop until I see a drastic change – if not a cure.” Marnie Harris, a hairdresser by profession, was young, healthy, active and beautiful; small wonder that the family felt blindsided by ALS. “It’s so easy to think that these things happen to other people, not us,” reflects Richard. They soon found out that ALS is an equal opportunity disease with no boundaries, and strikes “the most precious people.” Marnie died in April 2000, three years to the day from her ALS diagnosis, leaving the husband and two teen-age sons she adored. Like most of us, the Harrises didn’t know a lot about ALS until they were confronted with it. A timely referral to ALSA’s DC/MD/VA Chapter connected them with the information they needed. Learning about this disease is both helpful and scary, according to Richard, so the immediate and ongoing emotional support made the critical difference. Every conversation, every support group confirmed they were not alone and that the Chapter was there to meet their needs – including medical equipment, help with treatment choices and practical assistance for living each day. Richard feels a special sense of gratitude for Joan Deye, who unfailingly arrived at the Harris home when there were problems to sort through. As the end of Marnie’s life approached, her increasingly heavy care began to take its toll on her high-energy husband – a challenge faced in most PALS families. Richard’s diabetes worsened and he wound up in the hospital. Joan helped the Harrises come to grips with the need for a change and introduced them to Casey House, the inpatient program of Montgomery Hospice. Marnie liked its welcoming look, and the Casey House became her final home. “You know, ALS imprisons the patient,” says Richard. “But it also imprisons the whole family – we all experienced a kind of paralysis.” He began staging his breakout a month after Marnie died, when he went to Capitol Hill to testify about Medicare waivers – the lengthy and cumbersome process of getting coverage in one’s home for what is usually facility-based care. Holding up Marnie’s Medicare card that showed she’d be eligible for services in June, he described his wife’s death in April. He was a presence to be reckoned with. He still is. Richard and his sons continue their activism for ALS as well as other illnesses that often strike people in the prime of their life. They chaired ALSA’s Walk to D’Feet ALS® as a family. “I don’t want to see somebody else go through what we went through,” Richard tells us. “I still have years of medical payments ahead of me, and I still see how their mother’s loss affects my boys. But through this, I’ve met the most remarkable people – the wonderful people at the Chapter, the PALS and their families. They have changed me.” Marnie’s illness and death have given him a wholly different perspective on life. “I can breathe, I can play ball, I go to the gym or work – it’s being fully alive,” reflects Richard. “Don’t waste it!” He’s in his rebuilding stage now. Richard hopes to break out of his evening-and-weekend retail schedule and find a new path, making opportunities to form new relationships. ALS Advocacy will always be a driving force in his life; he “gets it” that it’s about numbers – the more people who are out there drawing attention to PALS issues, the greater the potential for more research money. He’s passionate about stem cell research. Richard will not let his fellow citizens or his legislators forget Marnie and the many husbands, sisters, children and dear friends who will meet ALS for the first time this year. Advocacy has the power to break the bonds of ALS. Richard Harris hopes for a real power surge this Advocacy Day and in the years ahead. Clinical Research on Familial ALSInvestigators at the The research team is searching for families where two or more family members have or had a diagnosis of ALS. Dr. Jonathan Glass, the principal investigator of the research, tells ALSA that they are particularly interested in identifying healthy members of these families that may be at risk for developing ALS. The initial contact will consist of a telephone conversation, lasting 10 to 20 minutes, during which investigators will ask questions about the individual’s health and the family history. Those persons at risk will be questioned as to their potential interest in participating in a clinical trial aimed at preventing or delaying the onset of disease. The researchers indicate that, based on the initial telephone conversations described above, a second study may follow that would include a treatment trial to evaluate compounds intended to prevent or delay the onset of ALS in at-risk individuals. If you believe you have familial ALS or may be at risk for familial ALS (two or more family members with ALS), and you are interested in learning more about this study, please call The ALS Center at Emory University toll free number at 888-413-9315. ALSA Wins Telly Award For New Public Service AnnouncementThe ALS Association (ALSA) has won two Telly Awards at the 26th Annual Telly Awards that recognizes excellence in commercials and programs in an international competition. These are the fifth and sixth Tellys won by ALSA.
The first award garnered by ALSA this year is for a 30-second public service announcement (PSA) featuring Dr. Richard Olney and Emmy-award winning actor Alan Rosenberg. Olney is an internationally renowned ALS researcher and physician who treated ALS patients for three decades before he was ironically diagnosed with the disease in June 2004. Rosenberg has played recurring major roles in numerous TV series. He also has appeared in many films and starred in plays. His most recent character on the CBS series “The Guardian” had ALS. The PSA, which begins with Olney in a wheelchair saying, “I’ve dedicated my life to ALS research and patient care,” and then shows him with ALS patients, urges viewers to support research, patient care and to keep hope alive. ALSA’s second Telly Award this year was for combining the PSA with a five-minute profile of Olney shown last year at a special tribute given for the neurologist at the University of California, San Francisco (UCSF), the same campus where he helped found the ALS Treatment Center and Research Center, one of 20 certified ALSA Centers. The PSA and profile were produced by Los Angeles-based RNB Communications, in conjunction with Blackstone Media Group in Irvine, Calif. Founded in 1978, the Telly Awards is the premier award honoring outstanding local, regional, and cable TV commercials and programs, as well as the finest video and film productions. The Telly Awards annually showcases the best work of the most respected advertising agencies, production companies, television stations, cable operators, and corporate video departments in the world. The PSA has been approved by and in the rotation of CBS, NBC and Fox networks and the The WB Television Network. “ALSA is extremely grateful to Dr. Olney for his precious time, and to Alan Rosenberg, for participating in a public service announcement that will leave a lasting impression with millions of viewers across the country. We also are very pleased that the Telly Award judges have recognized us again,” said Jeff Snyder, ALSA vice president of communications. “Hopefully many people who watch this emotional PSA will tell their families and friends about it and decide to support ALSA in our efforts to improve the life of people with ALS and to find a cure.” The Telly Awards is a widely-known and highly respected national and international competition and receives over 10,000 entries annually from all 50 states and many foreign countries. Each year, the judges consist of a group of advertising, production and other creative professionals. They represent both large and small firms from across the Last year, ALSA received a Telly Award for a 30- second PSA that features Boston Red Sox pitcher Curt Schilling, his wife Shonda, the Schilling family and a group of people with ALS and their caregivers lighting a candle symbolizing the fight against ALS. “Lighting the Way for a Treatment and Cure” was released to create awareness of the disease during National ALS Awareness Month in May 2004. Click here to view the latest award-winning PSA. ALSA Unveils New Gift Planning WebsiteWith an estimated 50 percent of seniors online, the old thinking that the web is for kids has gone out the window. In response, many charities, including The ALS Association (ALSA), are redesigning their development efforts to better reach older donors in electronic formats. In early 2005, ALSA launched a section of its website devoted to gift and estate planning at www.alsgift.org. Through the site, visitors can run customized proposals for a number of different gift vehicles, download and print e-brochures on various gift planning topics, read donor stories highlighting different gift planning opportunities, and request more information with just a few clicks.
In addition, there are two weekly e-newsletters, one for donors and one for professional advisors, dedicated to informing subscribers about different gift planning issues. The donor newsletter discusses issues such as the pros and cons of donating through your estate, updates on estate tax information and donor success stories. The second newsletter has content for professional advisors such as attorneys, CPAs and financial planners. “It is our intention to raise awareness of the benefits of gift planning and to increase the number of these kinds of gifts we receive, so that we can better serve ALS patients and fund vital ALS research,” said Juan Ros, ALSA Director, Gift Planning. To learn more about gift planning or to sign up for one of the e-newsletters, go to www.alsgift.org or click on “Donate” on the ALSA national website and then click on “Gift Planning.”
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