NEW DRUGS AHEAD?

Drugs like cyclosporine, commonly used to suppress the immune system in autoimmune disorders and organ transplants, can be altered so that they help nerve cells survive but lose their immunosuppressive actions, say researchers at Johns Hopkins University and Guilford Pharmaceuticals, both in Baltimore.

The researchers tested the drugs in various types of nerve cells in lab dishes and also tested the altered compounds in rats with crushed nerves. The compounds, which included altered versions of the drugs FK506, rapamycin and cyclosporine, helped nerve cells survive in all the test situations. They also helped the rats recover function after their injuries.

"The prospects for ALS therapy are particularly tantalizing," said George Karpati, a neurologist and MDA grantee at Montreal Neurological Institute. The key point here is that these are small molecules, unlike other neurotrophic agents, such as CNTF and BDNF, which are peptides. They probably can penetrate the blood-brain barrier [see Getting There below). FK506 does. I predict that after some more studies, trials in ALS will be forthcoming, using either these drugs alone or in combination with other drugs."

The findings are reported in the April 1997 issue of Nature Medicine.

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FDA PANEL REJECTS MYOTROPHIN

MDA Science Writer Margaret Wahl attended the FDA hearing and wrote the following report.

On May 8 [1997], the Peripheral and Central Nervous System Drugs Advisory Committee of the Food and Drug Administration (FDA) voted 6 to 3 against an application to market the drug Myotrophin for amyotrophic lateral sclerosis.

The application was submitted by Cephalon (West Chester, Pa.) and Chiron (Emeryville, Calif.).

Myotrophin is insulin-like growth factor 1, or IGF-1, part of a class of natural substances known as neurotrophic factors. The basis for using Myotrophin, which has to be injected, is that it may partially protect motor neurons from destruction. This protection has been shown in animals with nerve damage. In ALS, motor neurons gradually die, causing increasing weakness and paralysis.

Since June 1996, the companies have had permission from the FDA to distribute the drug free of charge in a random selection program known as "expanded access." Several hundred ALS patients have received the drug under this program, which is administered by the National Organization for Rare Disorders (New Fairfield, Conn.).

Also last June [1996], the FDA asked Cephalon and Chiron to submit more data in support of the drug's effectiveness and safety, and some panel members suggested that a third clinical trial might provide convincing evidence in favor of approval. At that time, a nine-month clinical trial in North America showed the drug was safe and moderately effective, with treated patients showing a 26 percent decrease in the rate of disease progression as measured on a standard scale of muscle function. At the same time, a nine-month trial in Europe showed no improvement and raised questions about safety.

At the May 8 [1997] hearing, we heard the drug companies present new data in three areas: 1) test-tube and animal data, 2) data about blood levels of the drug in humans and 3) follow-up data on survival of patients from the North American trial for about three years and from the European trial for about two years.

The FDA advisory committee, which included seven experts in neurology or neuroscience, one statistician and one patient advocate, voted 6 to 3 to disallow the application for Myotrophin, saying that none of the new data added to the information the panel had last year.

The committee said the animal and test-tube data weren't well correlated with human data or specifically related to ALS; the data about blood levels were uninformative, since they simply showed that blood levels correlated with dose of Myotrophin (an expected finding); and survival data likewise only confirmed previous findings, showing a slight survival benefit in the North American trial and none in the European trial.

The committee appeared to accept the drug companies' contention that Myotrophin is safe, despite the occurrence of excess deaths in the European trials. The companies said the excess number of deaths was due to a non-random distribution of patients in the treatment and placebo groups. The placebo group, the companies said, had an excess of patients with better risk factors compared to the treatment group.

PATIENT TESTIMONY

In addition to the drug companies presentations, we heard testimony from 19 people, including several with ALS and their family members, ALS activists and doctors who specialize in ALS treatment and research. Each emphasized the need for a therapy that slows the rate of progression and possibly extends survival. Each petitioned the committee to approve Myotrophin.

Fred Kanzler of Mount Holly, N.J., said, "I am happy to say I'm back, unlike many of my friends and fellow ALS patients who did not have the benefit of treatment with Myotrophin. Because of Myotrophin, one month ago yesterday, I turned one year older. . . . If that's not proof of efficacy [effectiveness] for this medication, I don't know what is."

Shelbie Oppenheimer of Bucks County, Pa., a young woman who received a diagnosis of ALS at age 28, also testified for Myotrophin. "Because of ALS there are many things that will never happen," she said. "When I lost strength in my left arm I could no longer pick up the children I loved so much when I was able to teach preschool. Many household tasks are too much for me now. Don't get me wrong. I don't miss doing the laundry. But I do miss the ability to do it. Because of ALS I will never have children of my own."

Dr. Ted Munsat of Tufts New England Medical Center in Boston said Myotrophin should be approved not because of compassion but because "the science is sound." He stated that the North American trial showed "consistency" and the European trial "can be explained."

Dr. Robert Miller and Dr. Deborah Gelinas of California Pacific Medical Center, both MDA clinic directors there, also testified in favor of Myotrophin's approval. Miller is director of the MDA/ALS Center at California Pacific. He said he found the efficacy data for Myotrophin to be "extremely convincing and internally consistent." He asked the committee to consider that a 26 percent decrease in the rate of disease progression in ALS is significant to patients.

Gelinas said she sees 250 to 300 ALS patients a year and that those on Myotrophin or Rilutek (the only approved drug for ALS) "do better than other patients."

Dr. Benjamin Brooks, who heads the MDA/ALS Center at the University of Wisconsin in Madison, argued that the committee must pay attention to the "art of medicine" and not just the science in considering approval of Myotrophin, which he favored.

QUESTIONS AND ANSWERS

The committee seemed moved at times by the testimony of doctors and those with ALS, but it stuck to its FDA-given mandate, which was to answer three questions. The questions and the committee’s answers follow.

#1: Is there evidence from more than one adequate and well-controlled clinical investigation supporting the conclusion that Myotrophin is an effective treatment for ALS?

The committee voted unanimously (9-0) that the application didn't provide evidence from more than one clinical investigation to support the conclusion that Myotrophin is an effective treatment for ALS.

#2: If not, do the findings of any single adequate and well-controlled clinical investigation lend support to a conclusion that Myotrophin is an effective treatment for ALS?

The committee voted unanimously (9-0) that one clinical investigation had lent support to a conclusion that Myotrophin was a "moderately" effective treatment for ALS.

#3: If so, can the committee, on the strength of the evidence provided in this single study and taking into account the failure of the only other completed adequate and well-controlled clinical investigation to confirm its findings, conclude that there is substantial evidence that Myotrophin is effective in the treatment of ALS?

By a vote of 6-3, the committee found that the results of the single clinical trial didn't provide substantial evidence to prove Myotrophin's effectiveness in the treatment of ALS.

The FDA advisory panel's decision isn't binding, but the agency usually follows the panel's recommendation.

MDA has invested $222,000 in IGF-1 research since 1991, and six of the eight trial sites in North America were MDA clinics.

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SANOFI DRUG TRIAL OPENS

An international group of ALS researchers met in Paris recently to organize a clinical trial of a new experimental ALS drug known as SR57746A -- or simply, "the Sanofi drug," after the company that makes it, Sanofi Pharmaceuticals (Montpellier, France).

Researchers from centers in North America, France, Italy, the Netherlands, Belgium, Germany, the United Kingdom, Ireland and Spain attended the meeting.

SR57746A seems to work by causing the body to make more of various neurotrophic ("nerve-nourishing") factors, such as BDNF, CNTF and NGF. Neurotrophic factors improve the survival of motor neurons, the cells affected in ALS, when tested in culture dishes and animal models of nerve damage. Preliminary data on treated patients show the Sanofi drug is promising.

To be in the study, you can be taking riluzole (Rilutek) but you can't be taking neurotrophic factor drugs, such as Myotrophin (IGF-1), BDNF or GDNF.

A list of the 28 North American centers follows. Seventeen are MDA clinics or MDA/ALS research and clinical centers, and these are marked with an asterisk.

U.S. CENTERS

ARIZONA

Mayo Clinic, Scottsdale
Dr. E. Peter Bosch
(602) 301-7583

CALIFORNIA

Center for Neurologic Study, San Diego
Dr. Richard Smith
(619) 455-5463

*California Pacific Medical Center, San Francisco
Dr. Robert G. Miller
(415) 923-3604

*University of California, Los Angeles
Dr. Michael C. Graves
(310) 825-9816

COLORADO

*University of Colorado, Denver
Dr. Hans Neville
(303) 315-7046

CONNECTICUT

*University of Connecticut Health Center, Farmington
Dr. Kevin Felice
(860) 679-4837

FLORIDA

*University of Miami
Dr. Walter Bradley
(305) 243-7526

GEORGIA

*Emory University, Atlanta
Dr. Jeffrey Rosenfeld
(404) 778-3754

ILLINOIS

*Northwestern University, Chicago
Dr. Robert L. Sufit
(312) 908-0774

MARYLAND

*Johns Hopkins University,Baltimore
Dr. Jeffrey D. Rothstein
(410) 955-6435

MISSOURI

*Washington University Medical School, St. Louis
Dr. Alan Pestronk
(314) 362-6981

NEW MEXICO

*University of New Mexico, Albuquerque
Dr. Raul N. Mandler
(505) 272-3342

NEW YORK

*Columbia Presbyterian Neurological Institute, New York
Maura Del Bene, R.N. (contact)
(212) 305-1319

*State University of New York -- Syracuse
Dr. Jeremy Shefner
(315) 464-5358

NORTH CAROLINA

*Bowman Gray School of Medicine, Winston-Salem
Dr. Peter D. Donofrio
(910) 716-9056

OHIO

The Cleveland Clinic Foundation
Dr. Hiroshi Mitsumoto
(216) 444-5538
(800) 223-2273, ext. 45538

*Ohio State University, Columbus
Dr. Jerry R. Mendell
(614) 292-1234

PENNSYLVANIA

Allegheny University, Hahnemann Campus, Philadelphia
Dr. Terry Heiman-Patterson
(215) 762-7635

TEXAS

*Baylor College of Medicine, Houston
Dr. Yadollah Harati
(713) 798-5993
(713) 798-5975

Veterans Affairs Medical Center, Houston
Dr. Yadollah Harati
(713) 794-7393

VERMONT

*University of Vermont, Burlington
Dr. Rup Tandan
(802) 656-4177

WISCONSIN

*University of Wisconsin, Madison
Dr. Benjamin R. Brooks
(608) 263-0170

CANADIAN CENTERS

ALBERTA

Foothills Hospital, Calgary
Dr. Thomas E. Feasby
Dr. Doug Zochodne
(403) 670-4418

University of Alberta, Edmonton
Dr. Michael H. Brooke
(403) 492-4019

BRITISH COLUMBIA

Vancouver General Hospital
Dr. Andrew Eisen
(604) 875-4405

ONTARIO

The Rehabilitation Center, Ottawa
Dr. Anthony Newall
(613) 737-7350, ext. 5506

London Health Sciences Center
Michael Strong, M.D.
(519) 663-3934

McMaster Medical Center, Hamilton
John D. Turnbull, M.D.
(905) 521-2100, ext. 6365

QUEBEC

Montreal Neurological Institute,Montreal
Dr. Neil R. Cashman
(514) 398-8532
(514) 398-5262

Pavillon Deschamps, Montreal
Dr. Pierre Duquette
(514) 281-6000, ext. 5068

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NEW DRUG STUDY TO START AT 13 CENTERS

An MDA-funded study of the drug gabapentin (Neurontin) is now open for people with ALS at 13 centers. Dr. Robert Miller, who directs MDA's ALS center at California Pacific Medical Center in San Francisco, will coordinate the study.

Gabapentin, manufactured by Parke-Davis, a division of Warner-Lambert (Morris Plains, N.J.), is already on the market for the treatment of epilepsy. A study published in the December 1996 issue of Neurology suggested it might have some benefit in ALS and that further studies were warranted.

The action of gabapentin is similar to that of the drug riluzole (Rilutek) in that it partially blocks the central nervous system chemical glutamate. However, the two drugs work by different mechanisms. Gabapentin seems to inhibit production of glutamate, while riluzole keeps it from being released at the place where one cell meets another (the synapse).

The new trial will last nine months and will include 200 people with ALS. Participants have a 50/50 chance of being assigned to the gabapentin group or the placebo (inactive substance) group. The drug and placebo will be given orally. After the nine-month study, everyone who wishes to receive gabapentin for the next six months can do so. This "open-label" phase will not involve a placebo group.

To be included, you must:

• have a diagnosis of ALS (to be confirmed by the trial site's neurologist)
• be between 21 and 85 years old (men and women OK, but women cannot be pregnant)
• have weakness of not more than three year's duration
• be expected to survive at least nine months
• meet certain criteria of muscle strength and respiratory function, and
• use birth control during the study (men and women).

You cannot participate if you:

• have a major illness in addition to ALS
• have only bulbar muscle symptoms (affecting speaking and swallowing)
• have previously taken gabapentin
• have taken riluzole or any investigational ALS drug within 30 days
• have used anti-convulsant medications within 30 days of the study, or
• have inadequate respiratory function.

There are some additional criteria:

You should be prepared to visit your center every four weeks for nine months and then at one, three and six months after that. Each visit will last about 1 hour and 15 minutes, except for the first visit, which will be longer.

There are 13 centers, 10 of which are MDA clinics or MDA/ALS centers. (These are marked with an asterisk in the list below.) To contact these centers about participating in the trial, use the phone numbers below. Some centers have provided E-mail addresses for people who have trouble speaking. You can also talk to your MDA clinic doctor about the study.

ARIZONA

Mayo Clinic, Scottsdale
Camille Kuplic
(602) 301-9825

CALIFORNIA

*California Pacific Medical Center, San Francisco
Giovanna Kushner
(415) 923-3604
or E-mail to Scott Watamura at swat@cooper.cpmc.org

*UCLA School of Medicine, Los Angeles
Delano Forte
(310) 825-7266

University of California, San Francisco
Jason Mass
(415) 476-3428/7851

COLORADO

*University of Colorado Health Sciences Center, Denver
Donna Burns
(303) 315-7046
or E-mail to at donna.burns@uchsc.edu

IOWA

*University of Iowa Hospital, Iowa City
Marta Heffner
(319) 353-8463

MINNESOTA

*University of Minnesota, Minneapolis
Adrienne Baranauskas
(612) 624-5978

NEW MEXICO

*University of New Mexico School of Medicine, Albuquerque
Martha Meister
(505) 272-3194

OREGON

*Oregon Health Sciences University, Portland
Tess Slazinski
(503) 494-4987
or Christina Howell at howellc@ohsu.edu

TEXAS

*University of Texas-SW Medical School, Dallas
Debra Aulenbacher
(214) 648-8668
or E-mail to daulen@mednet.swmed.edu

*University of Texas Health Science Center, San Antonio
Erin Iturriaga
(210) 567-1979
or E-mail to iturriaga@uthscsa.edu

UTAH

*University of Utah, Salt Lake City
Dallas Forshew
(801) 581-6873

WASHINGTON

Virginia Mason Medical Center, Seattle
Cassie Pike
(206) 223-6162

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DR. APPEL GOES ONLINE FOR MDA/ALS CONFERENCE

On April 19 [1997], MDA-funded researcher and clinician Dr. Stanley H. Appel went online to answer questions about ALS in a live computer conference that took place on the MDA Forum on CompuServe.

Appel serves as director of the MDA/ALS Research and Clinical Care Center at Baylor College of Medicine in Houston. (Views expressed in the following excerpts are those of Appel and his staff. Individuals with ALS should consult their medical teams before pursuing any treatment.)

Here are some highlights:

QUESTION: What is the incidence of ALS and does it vary?

APPEL: Normal incidence is approximately 1 in 100,000. Clusters of cases have been reported which dramatically increase the incidence, but the significance of these clusters is not known, and it could be merely a statistical fluke.

QUESTION: Much has been written lately about the glial-derived neurotrophic factor (GDNF) trials on Parkinson's. As they begin these trials with ALS, do you feel well see significant slowing of the disease or extended life expectancies?

APPEL: The problem with GDNF is that it's presently being administered directly into the ventricle of the brain through a hole drilled in the skull. As a result, this considerable intervention isn't going to be used extensively unless no other oral or subcutaneous medication is available. In addition to problems with the route of entry, there's no specific theoretical indication as to how, why or whether GDNF can interfere with the destructive process causing motor neuron loss. Nevertheless, GDNF should be tried in experimental studies and we all would be gratified if it may have some benefit.

QUESTION: I'm curious about why some ALS patients live only a year after onset, some average five years, and then there is that best-selling author with ALS who was diagnosed around 20 years ago. What accounts for such wide differences? What do you feel might slow the disease the most?

APPEL: It's true that there is a 20-fold difference in rates of progression and survival in ALS. No one has a good explanation for these differences. Certainly, genetic factors must play a role, and we feel that immunologic factors may also be important. With respect to slowing the disease, more research is needed on both cause and pathogenesis of the motor neuron injury to decide which drugs will be effective.

QUESTION: Does ALS ever burn itself out?

APPEL: There are rare cases that we have seen in which ALS progression stops and the patients improve. Other neurologists have reported similar cases. I wish these cases weren't so rare and I wish we understood what's responsible for the cessation of progression and the improvement that develops.

QUESTION: Is there anything that the patients who improve have in common, any characteristics noted, age, sex?

APPEL: We haven't noted any common factors, but that's probably because we don't know what specific question to ask. Certainly, age and sex don't appear to play a role in the rare cases. We do know that younger people do better, in the sense of living longer with the disease, than older people. But that doesn't seem to explain the rare case in which progression seems to stop.

QUESTION: What offers the most hope in rebuilding what has already been destroyed in the ALS patient, in your opinion?

APPEL: This is an extremely difficult question. It's hard to replace motor neurons that have already been lost in ALS. Our best chance is to prevent the loss of a motor neuron that has been injured and not yet totally lost. In addition, it's important to take advantage of the healthy neurons and prevent them from being injured. The problem is that we truly don't know how to do that at the present time. Hopefully, research over the next several years will give us important answers to this question.

QUESTION: Do you think there could be any connection between the Pamlico River (in North Carolina) and my ALS? This river was recently featured on TV as the original place where the microorganism phisteria was first discovered. I spent many hours in that river.

APPEL: We have investigated many hot spots of increased incidence of ALS over the years. These include studies of the San Francisco 49ers as well as studies of the petrochemical industry here in Houston. On no occasion have we been able to document with certainty the specific relationship of ALS with any environmental toxins or infections. There may well be such a relationship but it is extremely difficult to document.

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GETTING THERE: MORE THAN HALF THE BATTLE IN TREATING CNS DISEASE
Biotech Companies, Universities Team Up to Bypass Blood-Brain Barrier

ALS, like other diseases of the central nervous system, involves degeneration of nerve cells (neurons) inside the brain and spinal cord, the so-called central nervous system.

Formidable physical and chemical gatekeepers, known as the "blood-brain barrier" (although the term applies to the spinal cord, too), protect the central nervous system. During evolution, this barrier probably developed to keep harmful substances from reaching this delicate and non-renewable area of the body. (Cells in the central nervous system don't divide and can't replace themselves after injury, as other cells do.) An unfortunate modern side effect, however, is that drugs to treat central nervous system cells have just as hard a time getting past the gate as do toxins.

Not to be defeated, several biotechnology companies and university teams are feverishly pursuing strategies to bypass the blood-brain (or blood-spinal cord) barrier.

As we've previously reported, Amgen (Thousand Oaks, Calif.) and Regeneron (Tarrytown, N.Y.) are sponsoring trials of the neurotrophic factor BDNF delivered directly into the fluid surrounding the spinal cord, and Amgen is supporting a trial of GDNF (another neurotrophic factor) injected directly into the brain. (See The ALS Newsletter, vol. 2, no. 1, March 1997.)

And a joint university-pharmaceutical company team from France and Denmark reported on a gene therapy approach to treating the central nervous system in the April 1997 issue of "Nature Medicine." The group found that injecting genes for the neurotrophic factors CNTF and NT-3 into the muscles of mice with an ALS-like disease helped preserve nerves, improved function and increased life span by 50 percent.

In an accompanying editorial, Michael Sendtner of the Department of Neurology at the University of Wurzburg, Germany, said: ". . . it is not clear how many skeletal muscle groups of patients would have to be injected in order to guarantee the maintenance of the distal axons [nerve fibers] of all motor neurons. Nevertheless, the results of Haase and colleagues should help direct future efforts in developing new therapeutic strategies for human motor neuron disease. Some of the most important issues yet to be resolved are (1) the delivery of neurotrophic factors to sites where they can be readily taken up by motor neurons and (2) the selection of combinations of neurotrophic factors with complementary effects on motor neuron survival, regeneration and function."

The biotech company Emisphere Technologies (Hawthorne, N.Y.) is working on "carrier" molecules that bind to drugs and transport them across membranes (part of the barrier system), while CytoTherapeutics (Providence, R.I.) is experimenting with implantable capsules that secrete neurotrophic factors in the brain or near the spinal cord. They've had some recent success treating a monkey version of Huntington's disease with a brain implant and are trying a similar strategy in ALS patients in Switzerland, using a spinal implant.

In a March 27 [1997] story in the Wall Street Journal ("Hopes of Being Able to Deliver Drugs . . ."), reporter Laura Johannes noted, "One of the long-standing dilemmas of biotechnology is that discovery of potential cures has outpaced the ability to deliver drugs into the body."

These new strategies hold promise for solving that dilemma.

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BOOKS OFFER HELP

"Help Yourself: Problem Solving For The Disabled," by Douglas R. Bucy, 176 pages, $14.95. Macmillan (1996).

Bucy, a Connecticut businessman, received a diagnosis of ALS in 1992. The journal he kept until his death in 1995 is the basis for this book.

The first section covers the role of the primary caregiver, with insights into how the whole family is affected by the disorder, and professional caregivers, with clear explanations of the roles of each. The central section on independent living has detailed information about and drawings of home modifications and daily living aids from plate guards to porch lifts, as well as extensive lists of sources of equipment and supplies. Sections on psychological adjustment and financial issues are also detailed and informative.

Bucy's book is a fine source of practical and emotional support for those with ALS and their caregivers.

"The Resourceful Caregiver: Helping Family Caregivers Help Themselves," by the National Family Caregivers Association, 144 pages, $12.95. Mosby Lifeline (1996). Call (800) 325-4177.

This book is an exhaustive listing of every kind of resource needed to face the challenges of caregiving for someone with a disabling illness. Emphasizing the importance of getting help and caring for oneself, the book is an indispensable aid to the family or professional caregiver.

"Helpmates: Support In Times Of Critical Illness," by Harry A. Cole, 157 pages, $10.99. Westminster/John Knox Press (1991).

Cole is a professor of history and philosophy who cared for his wife after she had a stroke. His book focuses on ways of meeting the emotional and spiritual challenges facing the caregiving spouse.

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A GIFT FROM BARRY

Barry Goldberg of Plano, Texas, is a familiar figure to many in the MDA family. Since receiving a diagnosis of ALS several years ago, Barry has served as a spokesman for the Association, written articles for MDA publications and appeared on the Jerry Lewis Labor Day Telethon.

Below is a portion of a message, and a poem that Barry sent to an MDA staff member and friend who recently lost a loved one. He gave The ALS Newsletter permission to run them in the hope that they would benefit others.

Throughout the years I've been sick, for some reason people have been reticent to talk to me about their difficult times. They say things like, "My problems are insignificant compared to yours" or they think people like me ... people like us ... are so focused on our own lives that we can't feel deeply about others in need of support. We both know that's simply not true. Back in 1992, I had a friend who was coming from that view when she was having serious family difficulties, so I wrote her the following poem. I've shared it with many other friends since then and now I offer it to you.

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MDA AWARD RECIPIENT ADDRESSES DISABILITY CONFERENCE

Linguist, computer engineer and Fulbright scholar ANTHONY J. VITALE, who also happens to have ALS and be MDA's 1996 National Personal Achievement Award recipient, was a featured speaker at a recent conference on technology and persons with disabilities in Los Angeles.

Vitale, 52, who has worked for over two decades on developing computer-based technology to enhance the communication abilities of people with disabilities, is renowned for helping to create the DECtalk voice synthesis system, which produces spoken sounds to represent words typed on a keyboard.

Vitale received a diagnosis of ALS in 1993 and now uses a motorized wheelchair. Although he's lost the power of speech due to ALS and now relies upon his own DECtalk technology to communicate, the disease has not stopped Vitale from continuing to refine the technology so it will better serve those with impaired communication abilities.

Appropriately enough, Vitale was chosen by the University of California at Northridge's Center on Disabilities to deliver the first annual Dr. Anthony J. Vitale Alternative and Augmentative Communication Lecture on March 19 [1997].

Vitale, who has a Ph.D. in linguistics from Cornell but holds no medical degree, drew laughs when the DECtalk device delivered his opening remarks: "Please don't call me doctor. I haven't delivered a baby in years."

In a moving address delivered entirely through the DECtalk system's computer-generated voice and fed through the public address system, Vitale said that favorite activities such as jogging, weight-training and ice hockey were part of the past for him. But he refused to think of ALS only in terms of loss.

Serious illness, Vitale argued, can open up unexpected possibilities and help one grow psychologically and spiritually. He spoke of ALS as "the safari you never thought you'd get around to taking, the next mountain you wanted to climb."

Seated by his wife of 19 years, Jeanine, Vitale evoked an image of life as a journey with unforeseen complications and unexpected rewards. "This ticket is no guarantee you will reach your destination," he said. "Don't waste a moment of your life. Use all of your skills, your body and mind, and be glad that you can."

Vitale's listeners, who ranged from the able-bodied to those with visual, hearing, mobility and other kinds of disabilities, were noticeably moved by the presentation. They joined in a rousing ovation.

But Vitale wasn't finished. He tapped his keyboard and his DECtalk device began to warble "Strangers in the Night/Exchanging glances..." The computer even sang on key!

When it reached the second verse, the device started scatting "Dooby-dooby-doo" in the best Sinatra style.

The audience was delighted. Vitale demonstrated not only how versatile the DECtalk technology is, but how beneficial laughter can be in the most serious of situations.

Vitale was selected to receive MDA's National Personal Achievement Award in 1996 because of his remarkable efforts to advance communications technology and also for his work in the community. He's participated in MDA fund-raising events, written for MDA publications, made speeches on behalf of MDA and appeared on the Jerry Lewis MDA Labor Day Telethon to educate the public about ALS.

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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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