SUPPLEMENT FOUND BENEFICIAL IN ALS

From Lou Gehrig to Sammy Sosa, the fight against ALS may have come full-circle. Research now shows that creatine, an over-the-counter supplement popular with athletes such as baseball's Sammy Sosa and Mark McGwire, is roughly twice as effective as riluzole in extending the lives of mice with the SOD1-induced genetic form of the disease.

MDA-funded researcher M. Flint Beal of Cornell University Medical Center in New York headed the study that found that adding creatine to the diet increased the life expectancy of mice with ALS by an average of 26 days. The question is whether or not this increase would translate into the human equivalent of about six months.

"You could make that extrapolation," says Beal, noting that the gains for humans with riluzole were roughly equivalent to the effects of the drug in mice, "but it's not one that I would jump to." MDA has already laid the groundwork to follow up on this initial finding with a multi-center human trial to determine if creatine fulfills the promise of the animal studies.

The researchers think that creatine may work by helping to preserve motor neurons (nerve cells that relay messages to the muscles) that are normally destroyed in the course of the disease. In support of this idea, they found that mice with ALS that got creatine retained their motor neurons and their motor activity longer than mice that didn't get the supplement.

Riluzole, the only drug approved by the Food and Drug Administration for the treatment of ALS, works by blocking the release of a neurotransmitter, or brain chemical, called glutamate. A phenomenon called "glutamate toxicity" has been suggested to cause motor neuron death in ALS. In the March issue of Nature Medicine, Beal suggests creatine may help prevent motor neuron damage in the mice by promoting the cellular processes that get rid of excess glutamate.

Alternatively, Beal suggests that creatine may work by protecting motor neurons that have already been damaged, either by increasing the overall amount of energy available to the damaged cells, or by blocking the chemical pathway that leads to cell death.

"We're doing studies to try to figure out exactly how creatine is beneficial in the mice," Beal says, "but it's going to take us a while to figure that out." Ultimately, the researchers would like to know if creatine and riluzole used together will be able to preserve the motor neurons better than either can individually.

Like the molecules that make up the proteins in our bodies, creatine is an amino acid. Our bodies make creatine in the liver and kidneys, and we get creatine from the diet in meat and animal products. In our cells, creatine is changed into the compound "phosphocreatine," a source of fast energy for the muscles and nerve cells.

Creatine is classified as a "food supplement" (like a vitamin) and is sold over the counter at drug and nutrition stores. Although generally considered a safe supplement, it has been linked to isolated incidents of kidney damage in athletes. It's not known if creatine supplementation, especially over a long period, is safe for people who have ALS. Also, because creatine is classified as a supplement and isn't required to meet FDA standards, quality and concentration may vary from one manufacturer to the next. Consult your physician before taking creatine.

When details of the upcoming MDA creatine trials are known, instructions for participation will be posted on the MDA Web site at www.mda.org under "Clinical Trials," and in The ALS Newsletter. A list of frequently asked questions about creatine is on the Web site under "What's New?"

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IS THERE A GULF WAR CONNECTION TO ALS?

Almost 700,000 U.S. troops were deployed to the Persian Gulf in 1991 -- troops who were potentially exposed to a cocktail of hazardous materials, including low levels of nerve gas, insect repellents (DEET), depleted uranium, petroleum products and the anti-nerve gas agent pyridostigmine.

Since that time, some vets have experienced a host of medical problems, including headaches, muscle aches, fatigue and rashes that, together, have been dubbed "Gulf War syndrome." In 1996, the Presidential Advisory Committee on Gulf War Veterans' Illnesses determined that the medical complaints of many of these veterans were likely to be connected to their service in the Gulf.

Recently, there has been speculation that the incidence of ALS among those who served in the Gulf War is higher than would be expected in the 25-to-35 age group. The Department of Veterans Affairs and the Defense Department report 15 documented cases of ALS among Gulf War vets, but some vets who have ALS are compiling their own lists and report numbers as high as 40.

Whatever the correct number may be, some people (including journalists) have concluded that even 15 cases of ALS among Gulf War vets age 25 to 35 is much higher than the national rate. These conclusions are based on the assumption that 1 in 100,000 people in the United States have ALS, so you might expect about seven cases of ALS among the 700,000 Gulf War vets.

They then calculate that cases of ALS in the 25-to-35 age group should be about 25 percent of the total, and come up with 1.75 cases of ALS expected in Gulf War veterans of this age. If these calculations were true, then 15 cases of ALS would be much higher than expected, and 40 cases would indicate an epidemic.

But in making these calculations, reporters have confused the term "incidence" with the term "prevalence." Prevalence simply means the total number of people alive who currently have a disease. However, the statistic "1 in 100,000" indicates "incidence," not "prevalence" of ALS, meaning that 1 in 100,000 people per year receive a diagnosis of ALS.

If the incidence rate of ALS for men 25 to 35 is 0.79 cases per 100,000 per year (McGuire, Neurology 47:571-573, 1996), then you could expect about 5.53 new diagnoses of ALS per year among the 700,000 Gulf War vets (only 4 percent were women). If you multiply this number by the number of years since the Gulf War (eight), you arrive at a total number of 44 expected cases by 1999. Based on these numbers, it's likely that the government figure of 15 doesn't account for all of the cases of ALS among Gulf War veterans.

Though 44 is a good "ballpark" figure, it isn't set in stone. For instance, 44 cases of ALS might be expected within the whole population of Gulf War vets, but it might be very significant if these cases cluster among a subset of men who were exposed to a particular hazard. Until specific information is obtained on total cases of ALS and the exposure history of those servicemen, it will be difficult to evaluate ALS incidence levels in Gulf War veterans.

Also, if there is a delay of several years (or even decades) between exposure to environmental toxins in the Gulf War and the onset of ALS, it may be years before a correlation between these two events can be detected.

All statistics aside, the idea that chemical exposure during the Gulf War may have set the stage for ALS in some people isn't unreasonable. Many researchers favor a "multiple hit" hypothesis in which a subtle genetic predisposition to ALS is combined with environmental factors (such as exposure to toxic chemicals) to trigger the onset of sporadic ALS. Slightly higher incidence rates of ALS in the general population have been linked to pesticides known as "organophosphates," compounds chemically related to the nerve gas to which our government now says that up to 100,000 U.S. troops may have been exposed in the Persian Gulf.

Controversy also surrounds the government's use of the chemical pyridostigmine to protect U.S. troops from the effects of nerve gas. Pyridostigmine can be toxic in high doses, but the government claims that it doesn't cross the barrier between the blood and the brain and, thus, should not affect the central nervous system. However, a recent study in Fundamentals of Applied Toxicology suggested that certain common insect repellents and insecticides that were used in the Gulf War may compromise the blood-brain barrier. The researchers found that pyridostigmine administered with insecticides at levels that separately aren't toxic can cause brain neurotoxicity in chickens.

It's not yet clear that an abnormally high number of Gulf War veterans have been diagnosed with ALS, although there is ample evidence that these troops were exposed to chemicals that may be correlated with slightly higher rates of ALS. This is a very complicated question that only accurate documentation will begin to answer.

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A PERSONAL VIEW

Falcon's Cry: A Desert Storm Memoir by Major Michael Donnelly, USAF, Retired, with Denise Donnelly, 1998. 272 pages, $27.95, Praeger Trade.

Michael Donnelly is an Air Force pilot who was found to have ALS at age 35, just a few years after serving in the Persian Gulf War. There are 18 others like him, or 11, or 40, or more, depending on whose statistics you believe. (See "Gulf War Connection," page 1.)

In Donnelly's mind, there's no doubt that his service in the war led to his illness, and that thousands of Gulf War veterans can trace their cancers, neurological diseases and other ailments to the nerve agents and chemical weapons they encountered in the Gulf.

While fighting the effects of ALS at a time in his life when he expected to be enjoying his two young children and advancing in his career, Donnelly has also spent the past three years battling the military. He received full disability retirement benefits but, along with others, still struggles to be given some acknowledgment that his illness might be service-related.

Donnelly (who wrote this book with the help of his sister, a professional writer) offers a passionate account of the maddening world of ALS. His story is riveting as he and his family first search for an explanation, then for a way to slow the progress of the disease, then for some way to live with its consequences. Whether you believe the Gulf War to be the trigger for his ALS or not, you'll be riveted by his accounts of the coldness of the military doctors he visits and the eagerness with which the Pentagon denies any relationship between the war and subsequent illnesses.

Donnelly's story is a lively, literate account of a very personal dilemma. His fierce conviction that he got ALS because of chemical exposure during the war reflects the randomness of the disease and the mystery of its cause. Or perhaps it's a clue to solving the mystery.

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AFTER 60 YEARS, GEHRIG'S WORDS STILL INSPIRE

Lou Gehrig

More than anything else, it was a compliment from a fellow player in 1939 that signaled to Lou Gehrig that his legendary playing days had come to an end. When a teammate praised him for what he knew was a poor catch, Gehrig decided to hang up his glove.

Henry Louis Gehrig, known as the Iron Horse and baseball's greatest first baseman, had been one of the game's most celebrated and talented players since signing with the New York Yankees in 1925 at the age of 21.

He was often overshadowed by the two colorful Yankee titans with whom he played at different stages in his career -- Babe Ruth and Joe DiMaggio. Nonetheless, Gehrig, the quiet, unassuming kid from a working-class neighborhood in New York, carved out his own niche in baseball history, relying on talent, hard work and strength of character.

Loved by fans for his modest grace and good humor as well as for his fearsome hitting power, Gehrig racked up an awesome battery of records, including his most famous record of 2,130 consecutive games played, which remained unbroken for over half a century.

In 1938, Gehrig's batting average dipped below .300 for the first time in over a decade. Both his hitting and his dexterity on the field went into serious decline.

Gehrig knew something was wrong. He agonized about whether to stay with the team, confiding in his wife, Eleanor, that he didn't want to abandon the sport but that he dreaded dragging down his beloved Yankees with his fading performance.

During one game, a relief pitcher scooped up the ball, ready to throw it to first base, but had to wait for the slow-moving Gehrig to get in position to take the throw.

Although Gehrig felt it had taken much too long to complete the play, the relief pitcher congratulated him after the game. For Gehrig, a man of integrity, the words of empty praise were too much to stomach. He knew it was time to quit.

Eleanor Gehrig with Jerry Lewis

Gehrig retired as a player but stayed on as team captain. But his condition worsened, to the point that he could barely handle a deck of cards during the bridge games that took place during the team's rail trips. His customary walk to home plate to deliver the lineup to the umpire became increasingly precarious.

In June 1939, Gehrig received a diagnosis of ALS from doctors at the Mayo Clinic. His baseball career was over for good.

On July 4, in recognition of Gehrig's retirement, the Yankees held Gehrig Appreciation Day. More than 60,000 fans were in attendance, as was Mayor Fiorello LaGuardia.

Gehrig's grateful speech that day, including his famous declaration that he considered himself "the luckiest man on the face of the Earth," is now the stuff of legend.

In the months that followed, LaGuardia appointed Gehrig New York's parole commissioner. By 1941, Gehrig's condition worsened to the point that he had to resign that job as well.

On June 2, 1941, Gehrig, 37, died at his home with Eleanor by his side. It was 16 years to the day after the beginning of his celebrated 2,130-game streak.

A decade later, Eleanor, seeking some way to strike back at the disease that had taken her husband's life, became involved with a new organization called the Muscular Dystrophy Association, which included ALS in its program.

Eleanor eventually served as national campaign chairperson for MDA, and helped strengthen the Association during its formative years in the 50s and 60s.

Today, some 15 years after Eleanor's death and a full 60 years after Lou Gehrig's famous farewell speech, MDA remains the leader and guiding light among nongovernmental agencies striving to defeat ALS through comprehensive research and services.

For more on Eleanor Gehrig and MDA, see The ALS Newsletter, vol.1, no. 7. For a highly readable account of Lou Gehrig's life, see "Iron Horse: Lou Gehrig in His Time," by Ray Robinson (1991, Harper Perennial).

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TEXAN PITCHED TO GEHRIG

Not too many people can claim to have pitched to the mighty Lou Gehrig. Ralph Zeitz, 79, can.

As a young man, Zeitz pitched to Gehrig and other greats such as Joe DiMaggio when he was under a training contract with the New York Yankees. Although not officially part of the team, he pitched batting practice before games.

Three years ago, Zeitz, who lives in Conroe, Texas, received a diagnosis of ALS, the disease that took Gehrig's life.

Zeitz remains ambulatory, although he says he's begun to suffer some nasty falls. His vocal powers haven't faded yet. Memory, of course, isn't affected by ALS, and Zeitz has many unique recollections.

"Yes, I pitched batting practice to those guys, but I was just a youngster," he says.

Zeitz was picked to train with the Yankees by Paul Krichell, the scout who signed Gehrig.

"They signed what was called a gentleman's agreement contract," Zeitz says. "It was not a contract that would be legal in the courts but it made it so that other teams couldn't get me. I was with them so long that they gained enough confidence in me to let me throw to the first stringers.

"First round, they'd take five swings apiece, and then next round three swings apiece," he remembers of pitching to Gehrig and his teammates.

Zeitz was impressed with the businesslike way the Yankees organization was run. When not in uniform, the players wore coats and ties.

Zeitz remembers Gehrig, who was the Yankees team captain, as being "a gentleman at all times."

"He and DiMaggio sat near each other and they were both relatively quiet," he recalls.

Zeitz seemed to have a clear path to playing in the major leagues himself, but World War II intervened. He served in military intelligence.

After the war, Zeitz became a high school coach. He coached basketball, football and baseball for more than 30 years.

Since receiving a diagnosis of ALS, he's been treated at the MDA/ALS centers in Dallas and Houston.

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TECH CONFERENCE PRESENTS NEW PRODUCT, IDEAS

The 14th annual Technology and People with Disabilities conference held March 15-20 in Los Angeles and sponsored by California State University, Northridge, offered numerous seminars and product demonstrations relating to assistive technology, some of it applicable to ALS.

Computers and communication were the key words of the conference. Ted Kennedy Jr., who lost part of a leg to bone cancer as a child and who now works in disability law, gave the keynote speech.

Seminar topics included: how to integrate a multitude of programs on your computer and get them to work seamlessly to compensate for progressive speech loss; and how to operate a "mind mouse" that moves a cursor in response to thought waves. (Other computer mice on display operate by head movements or a shift in eye gaze.)

Other presentations focused on how people with disabilities can use the Internet to search for jobs; how professionals can evaluate different communication options for clients with ALS; and how to obtain financial assistance for assistive technology through Medicaid.

A presentation by a MicroSoft Corp. representative outlined some of the accessibility features of Windows, including an accessibility wizard. In contrast, another seminar focused on ways in which MicroSoft and other large corporations haven't been proactive enough in meeting the needs of the disability community.

In yet another seminar, a speech language pathologist spoke about the difficulty he encountered trying to tailor a popular speech recognition program to recognize words spoken by a client whose speech had been affected by cerebral palsy. The pathologist's solution was to create a new language, called "Zot," which substituted new words for standard English. When spoken by the client, the new words were more easily understood by the software.

Tom Whittaker, who says he's the first person with a disability to climb Mount Everest, is slated as next year's guest speaker. For more information on the 2000 conference, call (818) 677-2578 (V/TYY/Message), fax (818) 677-4929 or e-mail ltm@csun.edu.

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PSAs TARGET ALS

"Who's working harder than MDA to stop ALS? Nobody!"

If you hear those words from your TV during a station break, it means you're watching one of MDA's new public service announcements about ALS.

The segments feature Dr. Stanley Appel as he describes the effects of ALS and interacts with patients. Appel is director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston.

The announcements, in 20- and 30-second versions, were created by MDA to increase awareness and understanding of ALS and what MDA is doing to fight the disease. Networks, television stations and cable services air the spots at no charge to MDA as part of their commitment to community service.

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HELP FIGHT ALS TODAY AND TOMORROW

Many people who know the devastating effects of ALS are providing lasting support for MDA's battle against the disease. Through your will, you can designate a gift to MDA earmarked to support ALS research or services.

Bequests to MDA can be made with cash, securities, real estate, or other property. You can bequeath a percentage of the entire estate to MDA or make a bequest of the residue, donating property remaining after all bequests to family and others have been satisfied. You may also name a memorial gift in honor of a family or individual.

To give what remains of your estate after other bequests have been satisfied, just include the following language in your will:

"I give, devise and bequeath all (or a specified fraction of) the rest, residue and remainder of my estate, whether real or personal, of every kind and description, and wherever situated, to Muscular Dystrophy Association Inc., a New York not-for-profit corporation having its principal office at 3300 East Sunrise Drive, Tucson, Arizona, 85718-3208, for its program of research and services related to amyotrophic lateral sclerosis."

To give a dollar amount or percentage of your estate:

"I give, devise and bequeath the sum of $________ (or ________ percent of my estate) to Muscular Dystrophy Association Inc., a New York not-for-profit corporation having its principal office at 3300 East Sunrise Drive, Tucson, Arizona, 85718-3208, for its program of research and services related to amyotrophic lateral sclerosis."

Your attorney or financial adviser can help you work out the details of a bequest to MDA's ALS program. For more information, call MDA's Planned Giving Department at (800) 572-1717.

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NEW PRODUCT MAY HELP CONTROL CRYING, LAUGHING IN ALS

Avanir Pharmaceuticals of San Diego has permission from the Food and Drug Administration to begin testing a newly developed drug combination to treat uncontrollable outbursts of crying and laughing that affect some people with ALS. The outbursts aren't experienced as emotional and are thought to be due to abnormal transmission of impulses in the brain.

The mixture is composed of dextromethorphan, a common ingredient in cough medicines that acts in the central nervous system and has shown promise in controlling the unwanted outbursts, and an enzyme inhibitor that prolongs the action of dextromethorphan by preventing its metabolism. Avanir calls the product AVP-923.

"The problem with dextromethorphan is that it's rapidly metabolized, so you would need extremely high doses [to treat these symptoms], which lead to side effects," Avanir CEO Gerald Yakatan says. "This system allows better delivery, with extended higher blood levels." Side effects are expected to be less severe than with high doses of dextromethorphan alone.

Avanir is preparing for phase 1 studies to determine the drug's effects in healthy volunteers and may begin trials in ALS patients as early as June or July, says James Berg, Avanir vice president of clinical and regulatory affairs.

Yakatan says his company will "move through the development process as quickly as possible," but notes further input from the FDA will be needed.

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COENZYME Q10 STUDY OPENS IN NEW YORK

The Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York is looking for 25 people with ALS to participate in a study of coenzyme Q10, which has been shown to preserve nerve cells in mice with ALS.

The compound, sold in health food stores as an energy booster, acts as an antioxidant, meaning it interferes with formation of toxic compounds known as oxygen free radicals. CoQ10 also has a role in chemical events inside mitochondria, the energy-producing units of cells.

The study is "open label," which means participants will know what they're taking. Neurologist Salvatore DiMauro, an MDA research grantee, will direct the project. Participants must not be on respiratory support and must be able to travel to the ALS Center at 710 W. 168th St. in New York every month to every other month.

For more information, contact M.L. Del Bene, nurse clinician and co-director of the center, at (212) 305-1319 or bmd9@columbia.edu.

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SEVERE PAIN NOT COMMON IN ALS
Most Can Be Remedied Without Dangerous Drugs

People with ALS and their families have enough to worry about without the added burden of wondering whether uncontrollable pain is going to become part of the disease at some point. Unfortunately, some recent TV shows, including CBS's "60 Minutes," may have given people the impression that not only paralysis, but severe pain, eventually become part of ALS.

We asked neurologist Daniel Drachman, who co-directs the MDA/ALS Center at Johns Hopkins University in Baltimore, to comment on pain and its management in ALS.

"Pain is not a primary feature of ALS," Drachman says. However, mild to moderate pain, mostly secondary to immobility and weakness, does occur. "This kind of pain is secondary pain," he says. "And it is remediable."

Drachman says the sources of mild to moderate pain in ALS are as follows:

Weakening muscles. When weakened muscles are asked to do even moderate work, pain may be felt just as it is when a person with normal strength overexercises.

Cramps. Cramping of muscles is common in ALS, because the nerve supply is diminished.

Frozen joints. Paralyzed muscles mean joints won't be moved through their normal positions, and they can "freeze" in an uncomfortable position.

Abnormal stress on joints. During the later stages of ALS, the head may droop forward, and paralyzed arms may sag unsupported from the shoulders. The head and arms may pull on the neck and shoulder joints and the nerves around them, causing pain.

Prolonged pressure. When a paralyzed person is forced to sit or lie in one position for several hours at a time, enormous pressure is put on the body, especially over the bony parts most in contact with the surface of the mattress or chair seat. Pain and skin ulcers (pressure sores) can result.

Intestinal distention. When abdominal muscle weakness and immobility are combined, as they are in ALS, constipation and painful distention of the colon often occur.

Drachman suggests the following remedies:

Nonprescription pain remedies. Most of the mild to moderate pain in ALS can be managed with easily available, nonprescription pain remedies, such as aspirin; acetaminophen (Tylenol, others); and ibuprofen (Advil, Motrin, others). Check with your doctor if you plan to take these on a frequent basis or are taking other medications.

Prescription medication for cramping. Debilitating cramps may require prescription medication specially aimed at the cramping process. Phenytoin (Dilantin, others) and carbamazepine (Tegretol, others) are examples.

Heat. Heating pads, hot water bottles and microwaveable hot packs can relieve pain, soreness, stiffness and cramps. But never leave a paralyzed person unattended with a heating device in place; burns or fires can occur.

Physical therapy and range-of-motion exercises. To prevent freezing of joints, physical therapy is essential. You should have a certified physical therapist involved as the disease weakens the muscles, but family members can learn to do some of the therapy, such as massage and range of motion (gently putting each of the patient's joints through its normal range of positions). A relaxing massage with skin lotion can also help relieve pain and increase circulation.

Frequent repositioning. As a person becomes less able to move under his own power, he'll increasingly rely on others to move him. This must be done at least every few hours to prevent pain or, at the worst, ulcers of the skin.

Sheepskin and other pads. Special pads that diminish pressure on the paralyzed body can help with discomfort and lessen the chance of skin damage. One kind of device, called an alternating pressure pad, alternately inflates at different locations, changing the pressure points for the person lying on it. Many people find sheepskin booties and mattress pads or "egg-crate" foam mattress pads help reduce pressure and pain. Ask your doctor or physical therapist for advice.

Supports for weak parts of body. Neck collars can support a drooping head, and devices called gutter splints can keep weakened arms from pulling against the shoulder joints. Carefully positioned pillows and foam supports can increase comfort in a chair or in bed. Physical and occupational therapists can help with designing supports.

Stool softeners. Stool-softening medications can lessen constipation and distention. Check with your doctor or nurse clinician.

"Most of the pain in ALS is from the inability to move," Drachman says. "We're always fidgeting, always adjusting our position. When you're paralyzed, you can't." (Sitting in a theatre seat for too long can give the average person an idea of what it feels like to experience the pain of even temporary immobility.)

The ability to feel pain isn't lost in ALS, unlike in some conditions, such as some spinal cord injuries, so pain is likely to be felt. However, it's rarely severe or intractable, as pain may be in the late stages of cancer and some other conditions.

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EDUCATOR SCORES HIGH WITH FRIENDS, SUPPORT

With a quick wit and a zest for life, Fred Andelman tackles public school issues as he has for the past 30 years, except now some extra committees help him out.

Andelman, 60, received an ALS diagnosis in spring 1997. But his work as director of professional development for the Massachusetts Teachers Association had to continue. So what evolved from the support of family and friends was a series of "committees" to help Andelman carry on.

The Transportation Committee sees that he gets to work and home again. The Recreation Committee provides company for the former marathon runner on his daily walks. The Home Maintenance Committee helps with "fix-it stuff," and the Mitzvah Committee does good deeds, such as dropping off a good book, stopping by to tell a funny story or bringing something tasty to eat. "Mitzvah" is a Hebrew term for good deed.

Andelman, of Newton, Mass., said he's had to learn to let people help him, even with tasks most people take for granted, like getting dressed.

"If I didn't accept it, I'd have to go to work naked," he says matter-of-factly. "And it's cold here. This isn't Arizona."

Judy Andelman says her husband is "a real good sport."

"He's allowing us to do what we need to do so he can keep doing what he wants to do," she says. "He has a terrific sense of humor. Someone else would just curl up and say forget this."

Andelman also credits the people he has met through MDA with helping him live with ALS.

"As a grown-up, you're scared to death and it's a very lonesome experience," he says. "It's organizations like MDA that take so much of the isolation out of the disease."

In his job with the teachers association, Andelman is responsible for presenting policy ideas to legislators, planning professional development activities statewide and serving as a voice for teachers. He received the 1999 Friend of Education award from the Newton Teachers Association.

"Personally, I get the most enjoyment from running around meeting with [teacher] groups. That's really fun. I miss that."

His humor and enthusiasm remain inescapable, even if his in-person appearances are less frequent.

"Computers can be voice-commanded," he says excitedly. "It keeps me working on policy issues. And it doesn't talk back to me."

Andelman taught sociology in college during the 1960s, then worked with the Anti-Defamation League and the American Jewish Committee, two organizations that deal with civil and human rights. In the 1970s, he began working with the newly formed Massachusetts Teachers Association.

Today, educational issues are more prominent than ever, Andelman says.

"It's become the number-one local and domestic political interest besides health care," he says. "It's the notion of a shrinking global economy and the realization that education is the only way you can effectively compete. It's the only real asset we can give our kids that's lasting."

The Andelmans are a family of teachers. Judy teaches French in middle school, and their daughter, Debbie Andelman Klein, was a bilingual English and social studies teacher in Cambridge before her 2-year-old daughter, Eliza, was born. Now Debbie spends most of her time with her parents.

"She comes here several days a week," Judy Andelman says. "She understands the importance of being with us and the importance of us being with her and Eliza." Debbie's husband, Abram, is an economic consultant in Cambridge.

Besides keeping the family bond strong through frequent visits, Debbie organizes a team of more than 30 people each May for the MDA Great Walk. Last year, her group raised nearly $15,500.

"People have been very enthusiastic about walking," Klein says. "All of the support comes from people loving my father. He inspires people to want to do something."

Andelman hopes to take his inspiration further. He and the staff at the MDA office in Canton, Mass., are considering holding a disability awareness conference for the 500 unions in the state teachers association to discuss fund-raising ideas.

"We want to build some kind of relationship between the MDA and the MTA, like the fire fighters have," Andelman says. "Teachers are in a wonderful position to raise awareness."

He also wants to meet Jerry Lewis.

"Now that I've been one of 'Jerry's kids' for two years, I'd love to meet him," he says. "He's made me laugh my whole life."

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MEDICARE WAIVER BILL REINTRODUCED IN HOUSE

For the third year, a bill has been introduced in the House of Representatives to waive the 24-month waiting period for Medicare eligibility for people with ALS.

The Amyotrophic Lateral Sclerosis Treatment and Assistance Act of 1999, H.R. 353, was introduced by Rep. Lois Capps, D-Calif., in January and had about 100 co-sponsors at press time.

The new bill would amend the Social Security Act to waive the 24-month waiting period for Medicare eligibility on the basis of disability for those with ALS. Under current regulations, people under age 65 with disabilities are eligible for Social Security Disability Insurance after a five-month waiting period, then for Medicare after another 24 months.

H.R. 353 would also provide Medicare coverage for outpatient drugs and therapies for ALS.

The proposed legislation is similar to H.R. 2009, introduced in 1997 and 1998, except it eliminates a provision in the earlier bill that would have doubled federal funding for ALS research.

H.R. 353 has been referred to subcommittees of the Ways and Means and Commerce committees for hearings. Capps serves on the Commerce Committee. H.R. 2009 was never scheduled for committee hearings.

A spokesman for Capps says that increasing the number of co-sponsors is the best way to get a hearing scheduled or to have the bill attached to a larger health care measure. Since many lawmakers aren't familiar with ALS, a personal letter, phone call or visit explaining what the disease is, and how the law would help you, is the best way to convince your congressional representative to sign on as a co-sponsor.

You can write to: (Name of Representative), House of Representatives, Washington, DC 20515; or The White House, Washington, DC 20500. You can also write to your representative's local office, or get the exact office address and phone number from either of two congressional Web sites: www.house.gov or thomas.loc.gov.

In a related effort, Sen. Robert G. Torricelli, D-N.J., has introduced Senate Resolution 72, designating the month of May in 1999 and 2000 as National ALS Awareness Month. To contact your senator and ask for co-sponsorship of the resolution, write to (Name of Senator), U.S. Senate, Washington, DC 20510; or call (202) 225-3121.

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DO YOU HAVE MDA'S CAREGIVER'S GUIDE?

To assist families affected by ALS, MDA offers "When a Loved One Has ALS: A Caregiver's Guide." This 94-page manual is filled with helpful advice for all family members.

If your family doesn't have a caregiver's guide, ask the health care service coordinator at your local MDA office for one. Anyone with a diagnosis of ALS who's registered with MDA can receive the book free.

Other MDA publications on ALS are also available through your local MDA office and on ALS Web site.

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The Association welcomes gifts for ALS research honoring significant occasions of achievement. These gifts may be made in tribute to special people or to mark such events as anniversaries, birthdays, weddings, graduations or retirements.

THE ALS NEWSLETTER
Muscular Dystrophy Association
National Headquarters
3300 East Sunrise Drive
Tucson, Arizona 85718-3208

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