MDA RESEARCHERS SLOW, POSTPONE CELL DEATH IN MICE WITH ALS

For years, experts have observed that specialized muscle-controlling nerve cells — motor neurons — die mysteriously in ALS. Of crucial importance has been the question of how such neurons die.

It now seems clear that motor neurons in ALS are dying by a process called "apoptosis" — Greek for "dropping off," as a leaf falls from a tree. The other major type of cell death is called "necrosis" — from the Greek "to make dead." Necrosis, which involves inflammation and engulfing of the cell by immune-system scavengers, doesn't seem to play a major role in ALS.

Apoptosis is a less violent, more insidious process than necrosis, and scientists are only beginning to understand it. It occurs extensively during fetal development, for example, as organs are shaped and unwanted cells "deleted." It also may occur later on, if cells become infected with a virus or bacterium or become malignant.

In certain degenerative diseases, such as ALS, there seems to be too much apoptosis. Too many cells are quietly dying, leaving scarcely a trace of their existence and few clues as to the cause of their death.

Now, MDA grantee Dr. Robert Friedlander at Massachusetts General Hospital and Harvard Medical School in Boston reports that his research group has made an important advance in not only understanding, but slowing, the cell death process.

The team based its research on a discovery a few years ago that implicated interleukin-1-beta converting enzyme — ICE — in the cell death, or apoptotic, cascade. ICE makes it possible for "immature" interleukin-1-beta (IL-1-beta) to become "mature" IL-1-beta. In its mature form, IL-1-beta is an important link in the chain of cell death by apoptosis.

Using genetic engineering, the Mass General team, which included MDA/ALS Center Director Dr. Robert Brown, blocked the function of ICE, thereby blocking the formation of mature IL-1-beta. They found what they hoped to find — that they also slowed cell death in mice with an ALS-like disease.

Mice genetically engineered to produce an ICE-blocking compound lived an average of 27 days after the start of their ALS-like disease, while mice without this genetic treatment lived only an average of 11.7 days. The scientists considered this difference highly significant and published their results in the July 3 issue of Nature.

"I think these findings give us insight into a mechanism of cell death in ALS and open a new therapeutic avenue," said Friedlander, a neurosurgeon, noting that the strategy also looks promising in controlling the damage done by strokes.

Drugs that block ICE could in the future be tried in humans, Friedlander said. Such drugs, which belong to the general class known as "protease inhibitors," are already in development. He noted that these aren't the same drugs now used to treat AIDS.

MDA grantee Dr. Serge Przedborski at Columbia-Presbyterian Medical Center in New York was part of a team that published similar findings in the July 24 issue of Science.

Przedborski, an assistant professor of neurology, concentrated on a different protein. His team worked with the protein Bcl-2, which is known to protect against apoptosis. (In test-tube studies, it seems to protect cells against excess calcium, lack of oxygen and attack by free radicals, as well as other assaults.) They bred mice with ALS-causing SOD1 mutations and extra Bcl-2 genes.

The mice with the Bcl-2 genes (and therefore extra Bcl-2 protein) ended up with more and healthier motor neurons than the mice without the extra Bcl-2 genes. The Bcl-2 mice with SOD1-mutated genes developed ALS symptoms significantly later in life and lived longer than those with mutated SOD1 genes and no extra Bcl-2.

However, once the ALS-like disease was under way in the mice, the extra Bcl-2 didn't slow its progression.

"Our study demonstrates that Bcl-2-based strategies may have a preventive value — in other words, postponing the symptoms of ALS," Przedborski said. "This means that, should Bcl-2-based therapies be beneficial to humans, presymptomatic individuals who carry SOD1 mutations could be treated prior to developing any clinical signs of the disease and remain disease-free for some time. The success of this approach depends on the potency of Bcl-2 action in humans."

The findings could lead to the development of drugs that mimic proteins produced by Bcl-2 or other protective genes, the researchers say.

It isn't clear whether the findings in either of these studies will apply equally to sporadic ALS, since the mice used in the study had SOD1-linked, genetic ALS, Przedborski cautioned. However, SOD1 and non-SOD1 ALS are clinically indistinguishable diseases in humans, so cross-over application is likely.

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FDA FACES ONSLAUGHT AFTER MYOTROPHIN HEARING

A storm of reaction followed the May 8 "no" vote on Myotrophin (insulin-like growth factor 1) from an advisory panel to the Food and Drug Administration. Reactions ranged from outrage that ALS patients would be denied access to a drug with any possibility of therapeutic value to outrage that a drug company would seemingly take advantage of a vulnerable population by trying to market a valueless drug.

"People with ALS need drugs that work, period!" wrote Emanuel Maimone, who has ALS, in the May 20 edition of The ALS Digest, an online publication. "PALS do not need to spend $20,000 a year for drugs that do nothing at best, and kill you at worst. We spend enough money on wheelchairs, breathing assistance, home modifications, car modifications, and home care without needing to give $20,000 to a company for a worthless drug."

But Terry Frank, friend of Kyle Hahn, who has ALS, wrote in The ALS Digest on May 9, following the couple's eyewitness account of the Myotrophin hearing in Bethesda, Md.: ". . . we believe that Myotrophin is a step in the direction of helping all people with ALS find the ultimate regimen to improve their lives and hopefully find a cure in the process. IGF-1 has so much promise that there is always a chance that one of the bigger pharmaceuticals may offer to come in and partner to assist in the continuation of Myotrophin studies."

And, this message was posted in the Digest on May 15: "I told you we had not yet begun to fight, and that more artillery and a bigger army might be needed in order for us to get drugs such as Myotrophin approved. Well folks, we have until August to make our impression and impact on the FDA. August is approximately the time expected for the FDA to make an official decision on Myotrophin."

On July 18, NBC's "Dateline" covered the Myotrophin question, with views presented from both sides. ALS patient Shelbie Oppenheimer, a young woman who testified at the hearing and on television that her greatest fear was never hearing the words "Mommy, I love you," was firmly in favor of Myotrophin's approval. But a medical ethicist on the NBC program told viewers that ALS patients and other desperately ill people are the most vulnerable to being misled by those who would take advantage of their predicament. He advised caution in approving drugs that are costly and of questionable value.

The FDA was expected to make a final decision on the fate of Myotrophin by Aug. 11. On that date, the agency announced it would extend its review period for Myotrophin until Nov. 11.

You can still enter the random selection (expanded access) program to receive Myotrophin without charge by calling (800) 896-5855. This is a telephone information center in the Boston area.

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BILL SEEKS TO WAIVE MEDICARE WAITING PERIOD FOR ALS

A bipartisan bill that would allow people with ALS to be covered by Medicare more quickly has been introduced in the U.S. House of Representatives.

The Amyotrophic Lateral Sclerosis Research, Treatment and Assistance Act of 1997 was introduced in the House on June 23 by Rep. Walter H. Capps, D-Calif.

Among other provisions, H.R. 2009 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, and then for Medicare after another 24 months.

In presenting the bill, Capps said, "Most ALS patients have had productive working lives prior to onset of the disease and an estimated 17,000 of them are not age-eligible for Medicare. The cost of assisted living care and various effects of the disease can leave many patients' families financially drained."

The bill would also provide Medicare coverage for outpatient drugs and therapies for ALS. In addition, it would increase federal funding for ALS research to $25 million in 1998. In 1996, the National Institutes of Health funded $12 million in ALS research.

The bill was referred on June 26 to the Commerce Committee's Subcommittee on Health and Environment and the Ways and Means Committee's Subcommittee on Health. No action had been scheduled by either committee as of press time.

To express your opinion or urge the committees to take action, call or write your congressional representative. You can also call the Commerce Committee at (202) 225-2927, or the Ways and Means Committee at (202) 225-3625.

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MISTAKEN DIAGNOSIS? ALS AND SBMA CAN BE CONFUSED

by Dr. Kenneth Fischbeck

Mistakes in diagnosing ALS are rare these days, but they do occur. One disease that's sometimes confused with ALS is SBMA, or spinal-bulbar muscular atrophy, also known as Kennedy's disease.

SBMA is a form of motor neuron disease that can mimic ALS. Many of the symptoms are the same. SBMA causes weakness, particularly in the hip and shoulder muscles, with muscle atrophy and twitching (fasciculations). SBMA patients often have muscle cramps, and they may have difficulty swallowing.

SBMA differs from ALS in that the weakness is usually symmetrical and more slowly progressive, and there is no muscle stiffness (spasticity) or increase in reflexes. Also, SBMA is a hereditary disorder, with sex-linked (X-linked) inheritance. In general, only men are affected, and women in the family (mothers, sisters and daughters of the affected men) may carry the disease gene without showing any symptoms. Because the onset is late, SBMA patients are often unaware of others who are affected in their families.

The cause of SBMA is a mutation in the gene for the androgen receptor (the protein that binds the male sex hormone, testosterone). With this androgen receptor mutation, men with SBMA often have signs of androgen insensitivity — breast enlargement or reduced fertility. Because the mutation is known, SBMA can be diagnosed very easily with a genetic blood test.

SBMA has a better prognosis than ALS, with slow progression over 10 to 20 years. There is some indication that treatment with androgens (male hormones) may be beneficial, but this therapy is considered experimental. MDA is sponsoring research in this area.

If you're a man with slowly progressive motor neuron disease and the symptoms described above, particularly if other men in your family are affected, it might be worthwhile to be tested for SBMA. Ask your doctor!

Dr. Kenneth Fischbeck is an associate professor of neurology at the University of Pennsylvania School of Medicine in Philadelphia and a long-time MDA research grantee. In 1991, his group identified the gene that, when mutated, causes spinal-bulbar muscular atrophy.

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FOOTBALL PLAYER FIGHTS ALS

Seattle Seahawks reserve defensive tackle Glenn Montgomery was recently discovered to have ALS.

Montgomery, 29, was a draft-day acquisition of the Seahawks in 1996, after playing with the Houston Oilers for seven years. His illness was discovered after he experienced diminished strength following shoulder surgery last December. At first, arthritis was suspected of causing Montgomery's weakness. However, doctors did further testing and made a final diagnosis of ALS.

The football player is used to fighting hard, and in a recent interview with the News Tribune of Tacoma, Oilers General Manager Floyd Reese talked about Montgomery's stamina, "He loves football. The guy never backed down from a challenge. He's truly a competitor."

Seahawks coaches and players are rallying around Montgomery to help him tackle this challenge.

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GENETIC TEST FOR SOD1-LINKED ALS

Five percent to 10 percent of cases of ALS are thought to be genetic, and about 15 percent to 20 percent of these are caused by mutations in the chromosome 21 gene known as SOD1 (superoxide dismutase 1). In July, the Neuromuscular Laboratory at Northwestern University in Chicago began offering SOD1 genetic testing on a fee-for-service basis. The test requires a blood sample.

You can call the lab at Northwestern at (312) 908-8264 or call genetic counselor Mara Guadette at (312) 503-0154. Email at m-guadette@nwu.edu

The cost of the test is approximately $430. It takes four to six weeks to get results.

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HOW TO DONATE TISSUE FOR RESEARCH

When a loved one has a serious illness, it can be hard to think about helping others. But donations of tissue, particularly from the brain and spinal cord, are vital tools for researchers working on developing treatments for neurological disorders.

If you'd like to donate such tissue after death, you can do so by contacting the University of Maryland or University of Miami Brain and Tissue Banks. These programs are funded by the National Institutes of Child Health and Human Development. Arrangements for tissue donation, including signing forms, should be made as early as possible.

Your MDA clinic director has received detailed information about these programs, and you may wish to discuss your plans with him. You can also call the programs directly, using these numbers:

University of Maryland
Baltimore, Md.
(800) 847-1539

University of Miami
Miami, Fla.
(800) 592-7246

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11 WITH ALS EARN MDA ACHIEVEMENT AWARDS

Eleven men and women affected by ALS have received 1997 MDA Personal Achievement Awards for their states. They are:

COLORADO:

Gaelen D. Gipson of Aurora, 37, a political campaign public relations consultant

GEORGIA:

Laura Murphy of Atlanta, 44, an attorney and coordinator of central staff attorneys for the Georgia Supreme Court

HAWAII:

Albert "Britt" Robillard of Kailua, 53, a professor of sociology at the University of Hawaii at Manoa

IOWA:

Theodore C. Heine Jr. of Waverly, 63, professor of accounting at Wartburg College

INDIANA:

David Walters of Fort Wayne, 44, a retired General Motors assistant plant manager and manufacturing specialist for Fort Wayne Foundry

LOUISIANA:

Margaret LaBella of Harvey, 49, a retired elementary school teaching assistant

MARYLAND:

J. Glenn Harwood Sr. of Crofton, 56, a program manager for the U.S. Small Business Administration

MISSOURI:

Donald L. Post of Lee's Summit, 54, special events coordinator for a nonprofit organization

NEBRASKA:

Brenda Miller of Fremont, 40, a former bookkeeper

TENNESSEE:

William R. "Randy" Glover of Brentwood, 36, formerly a sales representative

VIRGINIA:

Michael R. Correll of Roanoke, 51, a musician and president of Correll Missionary Ministries

MDA's Personal Achievement Award program recognizes the accomplishments and community service of people with disabilities caused by any of the neuromuscular diseases in MDA's program.

MDA's 1996 national award recipient is Anthony J. Vitale of Northboro, Mass., a linguist and computer engineer who helped develop the DECtalk voice synthesis system to assist people with communication disabilities. Vitale is affected by ALS.

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WOMAN LEAVES $500,000 FOR ALS RESEARCH

An Oklahoma woman has left a bequest of $500,000 to the Muscular Dystrophy Association to fund ALS research.

Judith Pape Adams of Tulsa left the sum in her trust agreement to fund grants for ALS studies. Adams died from ALS in September, a few weeks before her 57th birthday. She was an avid gardener who maintained a greenhouse.

MDA encourages gifts earmarked for ALS research or services. For information on ways to remember MDA in your estate plans, please call Fred Stecker at (800) 572-1717.

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ARE MERCURY FILLINGS TOXIC?

This is a question people with ALS want answered, according to several Internet postings.

Dr. Robert Miller, MDA's ALS research and clinical center director at California Pacific Medical Center in San Francisco, doesn't think mercury fillings are anything to worry about.

"While we do not have all the answers about the effects of mercury and dental fillings upon the nervous system, I am persuaded that the evidence which is available strongly suggests that there is no cause and effect relationship between [mercury] amalgam and ALS," Miller says. "I am aware of the very strong opinions that suggest the opposite view; however, there has been no solid evidence to point to any cause and effect relationship between mercury in dental fillings and ALS."

The American Dental Association agrees, noting in its pamphlet on the subject: "The Food and Drug Administration has concluded that mercury amalgam causes no demonstrated clinical harm to patients and that removing amalgam will not prevent adverse health effects or reverse the course of existing diseases." The ADA publication notes that exposure to mercury from environmental sources is greater than that from dental sources.

Neither statement rules out, however, that mercury could be toxic to certain highly susceptible people, such as those with genetic mutations that haven't yet been identified but that could alter one's reaction to metals such as mercury, or to other substances that are harmless to most people.

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SIX LEVELS OF HOPE

by Dr. Lewis Rowland

I have a standard pattern of six levels of hope. The first level is that the diagnosis could be wrong, because that happens once in a while. However, although there hasn't been a formal analysis of the accuracy of the diagnosis of ALS, I'd bet it's more than 95 percent in ALS centers.

The second level is the miracle of spontaneous remission. I use the word "miracle" because I don't want people to count on it. There have been about a dozen reported cases in which there was a reasonable diagnosis of ALS, not just lower motor neuron signs, and the disorder spontaneously disappeared.

The third level of hope is that we may find an immunologic disorder that can be treated with immunosuppressive drugs and the patient will get better.

The fourth level is that there are drugs out there for which benefit is claimed, and we'll use them. We prescribe riluzole, and if patients also want to take gabapentin, that's fine with me. If they are on a trial of brain-derived neurotrophic factor (BDNF), that's also OK with me. They can do whatever they want to do. If they want to take antioxidants on top of that or get acupuncture, they should do it. They should do whatever they want. I think it's incumbent upon all of us to keep developing new drugs for new clinical trials.

The fifth level of hope is probably the most important. From my start in neurology in 1950 to now, in terms of the number of people working on the causes and pathogenesis of ALS and evaluating treatment, it's an entirely different world. Sooner or later, someone is going to get smart or lucky, or both, and we'll have a really effective treatment. That's my belief.

Each patient just has to hope that we'll do that fast enough. The patients can do their own part in this effort, and that is the sixth and last level of hope. Patients can use political pressure to get Congress to support the budget for the National Institutes of Health. If the patients have sufficient money, they can participate in the advancement of the search for an effective treatment or cure for ALS research through their gifts to MDA and other institutions supporting ALS research. Their real hope is in research.

Dr. Lewis P. Rowland directs the MDA/ALS Center at Columbia Presbyterian Medical Center in New York, where he heads the Department of Neurology. He's a long-time MDA research grantee and a member of MDA's Medical Advisory Committee.

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MDA EXPANDS INTERNET SITE AT www.mda.org

MDA has greatly expanded its site on the World Wide Web.

With newly designed, colorful graphics and a much larger menu of features, www.mda.org offers up-to-date news and information on MDA's research and services programs, including its efforts in ALS.

Among other features, the MDA Web site now allows users to locate the nearest of the Association's 186 local offices and its 230 hospital-affiliated clinics by typing in their zip codes.

MDA publications, including the national magazine Quest, The ALS Newsletter, pamphlets and brochures can also be read on and downloaded from the Web site.

Before and during the Jerry Lewis MDA Labor Day Telethon, Internet surfers can go to the MDA Web site to see announcements of Telethon entertainers. Computer users can also make donations online during the Telethon and year-round.

MDA national sponsor AT&T donated technical services helping to make the Web site possible. AT&T is also offering prepaid phone cards worth 100 free minutes of long-distance service to anyone who donates $25 or more to MDA through the Association's Web site and registers as an AT&T secure buyer. The SecureBuy Service protects credit card information online.

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MDA ISSUES CAREGIVER'S GUIDE

MDA's new, comprehensive guide for caregivers of people with ALS is now available through the Association's local offices.

When a Loved One Has ALS: A Caregiver's Guide is a 94-page, illustrated manual filled with practical advice for meeting the medical, emotional, financial and everyday challenges faced by those who are primary caregivers for people with ALS.

"This publication brings together under one title the detailed information about living with ALS that MDA continually presents through its brochures, magazine and newsletter articles, and videos on ALS," said Robert Ross, MDA senior vice president and executive director.

The guide covers topics related to physical care of a person with ALS, including medical treatments, nutrition, respiratory care and communication. Another section explores the emotional and physical demands made on the caregiver.

Other topics covered include hospices, living wills, finding home care assistance and governmental financial support. The guide contains an extensive list of resources, including books, organizations, Web sites, and the addresses of local MDA offices and clinics.

The primary caregiver for anyone with a diagnosis of ALS who is registered with MDA can receive a copy of the guide for free. Just call your local MDA office, or call (800) 572-1717. Additional copies are available for $10 from MDA, 3300 E. Sunrise Drive, Tucson, AZ 85718.

The guide was prepared with the support of Cephalon, a pharmaceutical manufacturer.

On page 62 of the guide, an incorrect price is listed for the book Communication and Swallowing Solutions for the ALS/MND Community. The correct price is $8.

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GENETIC FACTORS INFLUENCE CHANCE OF ALS

Genetic factors have a major influence on one's chances of developing ALS, and exposure to petroleum-based chemicals and paints may also contribute, says a study in the June Journal of Neurology, Neurosurgery and Psychiatry. British researchers who studied 77 twins with ALS say they've found that genetic factors (not necessarily related to SOD1) have a much greater influence on whether or not someone develops ALS than previously thought.

In this study, the researchers concluded that "between 38 percent and 85 percent of variation in motor neuron disease is due to inherited factors" and that "even in so-called sporadic motor neuron disease, with a conservative approach to analysis of the data, genetic influences are significant."

The researchers also found that exposure to petroleum-based chemicals and paints probably plays a role. These chemicals probably work as ALS "triggers" against a background of genetic predisposition, the research suggests. The researchers say the preference of ALS for men may exist because men are more likely to work with noxious chemicals than are women.

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WHAT ABOUT MSG?

Questions about MSG (monosodium glutamate), a frequently used food additive, are common in the ALS and neurologic disorders community.

A group known as the Truth in Labeling Campaign of Darien, Ill., is particularly concerned about the effects MSG may have on brain cells.

But Dr. Jeffrey Rothstein, who co-directs the MDA/ALS research and clinical center at Johns Hopkins University in Baltimore, has been studying glutamate for years, and he isn't worried. "The glutamate you take in your diet, the brain keeps out," Rothstein says. "This is because of the blood-brain barrier."

Glutamate is made by nearly every cell in the body, Rothstein says. Excess glutamate made inside the nervous system has been found damaging to motor neurons, and Rothstein is among those responsible for linking this finding to ALS. The drugs riluzole (Rilutek) and gabapentin (Neurontin) work by partially blocking glutamate inside the nervous system. However, says Rothstein, "dietary glutamate isn't toxic to motor neurons. I tell my patients not to worry about it at all."

Rothstein notes that there was some research in the 1960s that showed that an area of the brain known as the hypothalamus could be damaged by dietary glutamate. However, he says, this damage was found to happen only in infants. The baby food industry took the glutamate out of its products by the early 1970s, he says.

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BASEBALL COACH KELLER RECEIVES SPECIAL AWARD FROM COLLEGE

At his retirement ceremony on May 3 as baseball coach at Concordia Lutheran College in Austin, Texas, James Keller received a signal honor, the kind reserved for baseball greats such as Lou Gehrig. Keller's Number 19 coaching jersey was permanently retired from play in honor of the coach's years of service to the team and the college.

Keller, a former athlete himself and a dedicated family man who has ALS, has inspired his players to perform at the highest level. Although the disease has progressed steadily, requiring Keller to use a wheelchair and a feeding tube, his commitment to lead his players to high levels of achievement has never flagged.

Immediately after receiving the diagnosis of ALS in 1992, Keller and his wife, Caroline, began to immerse themselves in medical information to better understand the disease. Segments about Keller have appeared since 1993 on the national broadcast of the Jerry Lewis MDA Labor Day Telethon. In addition, Keller has spoken at MDA functions and events to help educate the public about ALS and raise funds for ALS research and services.

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AUTHOR DISPLAYS UPBEAT ATTITUDE

How Will They Know if I'm Dead? Transcending Disability and Terminal Illness by Robert C. Horn III, 1997. 146 pages, $12.95. St. Lucie Press, 100 E. Linton Blvd., Suite 403B, Delray Beach, FL 33483; (561) 274-9906.

Horn, professor emeritus of political science at California State University, Northridge, here tells the story of his adjustment to life with ALS. After receiving the diagnosis in June 1988, Horn gradually had to give up many of the things he loved, including coaching girls' soccer, traveling the world and full-time college teaching. Yet he begins Chapter 1 with the statement, "I have no complaints about my life."

Horn's autobiography — despite the unfortunate title — reveals the upbeat attitude he's maintained while losing his mobility and speech, and coming to rely on a ventilator, computer and round-the-clock caregivers. He cites a psychological study showing that ALS patients with the lowest ratings of depression, hopelessness and stress live longest. Early in his disease, Horn decided to be a survivor.

Horn gradually found new meaningful activities: writing for his church newsletter, managing a fantasy baseball team, battling Medicare and insurance companies, appreciating family and friends, and exploring his thoughts and memories. He approaches it all with curiosity and humor.

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NEW ALS CENTER IN ATLANTA

MDA's roster of ALS research and clinical centers now totals 15 with the addition of the MDA/ALS Center at Emory University in Atlanta, Ga. The director of the clinic, Dr. Jeffrey Rosenfeld, is an assistant professor of neurology.

Some 275 ALS patients are seen at the Atlanta clinic, with many participating in clinical trials. The new center can be reached at (404) 727-3818, or by calling the MDA office in Tucker, Ga., at (770) 414-1982. For a complete list of ALS centers supported by MDA, go to MDA's home page on the Internet at www.mda.org and click on "clinics."

Other cities with MDA/ALS centers are Baltimore; Boston; Chicago; Dallas; Denver; Durham, N.C.; Houston; Los Angeles; Madison, Wis.; New Haven, Conn.; New York; San Francisco; and St. Louis, Mo.

MDA/ALS centers offer highly focused programs of research and medical management directed at combating ALS. However, MDA also offers a full program of clinical services for ALS patients at all of its 230 hospital-affiliated clinics across the country, including participation in clinical trials of experimental treatments. The Association also sponsors dozens of research projects on ALS in the United States and abroad.

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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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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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