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Maine Group Dedicated To ALS Awareness
ALS, a motor neuron disease, was first identified in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the 1990's have brought a wealth of new scientific understanding about the physiology of this disease.
Lou Gehrig, with whom ALS is most commonly associated, first brought national and international attention to the disease back in 1939 when he abruptly retired from baseball after being diagnosed with ALS.
However, ALS is not just Lou Gehrig's disease and it knows no boundaries. The disease has cut short the lives of such notable and courageous individuals as Hall of Fame Pitcher, Jim "Catfish" Hunter, actor, Michael Zaslow, creator of Sesame Street, Jon Stone, actor, David Niven, boxing champion, Ezzard Charles, Pro Football Player, Glenn Montgomery and Senator, Jacob Javits.
ALS is one of the most devastating disorders that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.
Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will survive more than ten years.
Credit: The ALS Association Calabasas, California
An ALS group has been formed in Maine, thanks to the efforts of Joseph Mayo of Augusta, Clerk Emeritus of the Maine House of Representatives, where he served five terms as a representative, and another five terms as House Clerk. In 1999, he was diagnosed with ALS. Determined to work as long as possible, Joe initiated a campaign to educate others about people living with this disease, as well as working three days a week at the State House.
Tony Bok of Camden recently invited me to attend the Maine ALS group meeting at the State House in Augusta. Not knowing many details about this disease, I had prepared myself with a brief online attempt to understand what the disease was and how it affected those diagnosed with ALS. One thing I had been told early on: Maine needs to promote more ALS awareness and education for individuals -- and doctors.
Upon entering the room, the facilitator, and long-time friend of Joe Mayo, Rita Melendy, welcomed me and offered an invitation to sit in one of the seats that were arranged in a circle. Over the next 10 minutes, people would arrive; some people would have conversations, some would laugh, just like every other meeting, prior to convening.
Soon, Rita informed us that Joe would not be at the meeting; this would be the first time he was unable to attend. And Joe Mayo sent his affectionate regards to the group.
The opening round of introductions began in a serious tone with each person telling about themselves and when they, or their family member, were diagnosed with having ALS. The total number of people in the room was 20, and reported to be one of the largest groups to date. Approximately half of all people in the room were diagnosed with ALS. I would soon discover that these people also represented 50 percent of all people in Maine living with ALS.
Kandyce Powell of the Maine Hospice Council was the first guest speaker. She gave an overview of the hospice system in Maine. She indicated that there are 27 direct hospice units in Maine that provide end-of-life care. Additionally, there are volunteer efforts in hospice in many local communities for people who have no insurance and are unable to afford these services. Ultimately, ALS patients require a high level of care as the disease progresses. And like most people, the ALS patients will choose to remain in their homes as long as humanly possible; therefore the importance of planned hospice services to support an individual's need for quality of life.
The next speaker was Helen, a representative of Aventis Pharmaceuticals in New Jersey, makers of "Rilutek," the first-line therapy drug for slowing down progression of ALS. It was at this point in the meeting that the questions and interaction began to mount considerably. Many shared their experiences of taking Rilutek. Some told of horrendous side effects after taking the pill-form drug, while others had minor discomfort; some no symptoms at all. Several members of the group had not taken the drug and were being cautious about the hope that Rilutek may imply in lengthening one's life span or quality of life while living with ALS. The price tag is an expensive $989.00 per month; another issue of concern for some who may not have insurance coverage or their insurance company will not sufficiently cover costs.
The common thread of the present discussion was the pronounced hope for a cure to ALS. "Why don't the pharmaceutical companies, including Aventis, conduct more aggressive research into a cure for ALS?" one person asked. The answer is purely economic: the annual incidence of ALS is 20 people for every 1 million population. That translates into Maine having fewer than 30 people diagnosed with the disease annually. Nationwide, the number of cases is just over 5600. At any given time, across the United States, there are a total of 30,000 living with ALS. Plainly said, research is expensive when the market can't bear the costs because of low demand. Perhaps advocacy will encourage the federal government to legislate funding for increased ALS research?
Courage, teamwork, and honesty are the most obvious words that come to mind as I listen to the stories of pain, setback, renewed hope, and never-ending determination. Passion was noticeably in the eyes of all, the fragility of life plain to see.
ALS Links and Information Resources
Maine ALS support:
Ride for Life
The ALS Association
The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against amyotrophic lateral sclerosis (often called Lou Gehrig's disease). The ALS Association seeks to promote awareness and understanding of ALS and the work of The ALS Association by providing up-to-date information and education materials to the ALS community…ALS patients and families, caregivers, researchers and members in the health care fields.
The ALS Association National Office
Information and Referral Service: 800-782-4747
New England Chapter of ALSA
Northern New England CIO
The National Organization for Rare Disorders, Inc. (NORD)
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
The National Organization for Rare Disorders, Inc.
Programs that help people who are unable to pay for orphan drugs.More ALS Links http://www.wfnals.org/links/index.html Academic and research links from around the United States and the world.