PILOT STUDY OF BDNF COMPLETE
Results Uncertain, Further Studies Under Way

Results of a 30-person pilot study of brain-derived neurotrophic factor (BDNF) in ALS were presented this spring at the annual meeting of the American Academy of Neurology. The findings, which the study's sponsor emphasizes must be interpreted with extreme caution, show a possible positive effect on survival in ALS.

More trials are needed and are already under way.

The drug is based on a natural substance produced in the nervous system that has shown promise in preserving nerve cells in laboratory situations.

A large-scale clinical trial of low-dose BDNF in ALS ended in 1996 and, on first analysis, showed no benefit. In that study, as in this year's pilot study, BDNF was injected subcutaneously (under the skin). In another, current study, BDNF is being injected into the fluid surrounding the spinal cord.

Closer Look

A closer look at the data from the first subcutaneous BDNF study revealed that a subgroup of patients who got BDNF appeared to benefit from it. This group of patients included those whose forced vital capacity (a meas-ure of respiratory function) was less than 90 percent of normal and those who reported that they had diarrhea, says neurologist Jesse Cedarbaum, vice president of clinical affairs at Regeneron.

It was found that diarrhea may be an indicator that the drug is doing something in the body.

Cedarbaum explains things this way: "Not all patients respond the same way to a given dose of a drug. Everybody knows someone who says, 'If I take more than one aspirin, I get sick.' There are some drugs where, if there's a side effect, you know the drug is affecting the person. BDNF is not a drug that you can give and then people will be stronger right away, so you need something else to tell you that the patient is getting a high enough dose, that the drug is doing something to them."

That indicator, Cedarbaum says, could be diarrhea. He also noted that the diarrhea was found to be manageable by most people with over-the-counter medications and that, in fact, some patients who were later taken off the drug complained that they missed the constipation remedy it provided.

Pilot Study Small, Not Controlled

The pilot study of high-dose subcutaneous BDNF looked at 30 ALS patients in three major medical centers, all of whom got the drug. There was no control group getting a placebo. Instead, the researchers compared those on the drug to the predicted outcome for people with ALS not getting the drug, based on historical information (past case records) on ALS survival.

Those chosen for the study all had forced vital capacities of 60 percent to 90 percent of normal, representing a point in their illness that the research-ers felt would make them a fairly homogeneous group in which drug effects might be more easily seen.

These patients were fairly advanced in their disease course. For example, at the start of the study, 77 percent of the patients had made some change in their work or lifestyle; 45 percent were unable to drive; 45 percent were using some sort of mobility aid, usually a wheelchair; and 22 percent were unable to work or manage their households at all.

At the end of a year, 80 percent of the trial participants had survived, while the expected survival percentage based on general ALS statistics from previous clinical trials would have been between 67 percent and 70 percent.

Cedarbaum says he can't emphasize enough that these results, while they appear encouraging, can't be overinterpreted.

"This is compared to projections from historical controls," Cedarbaum said. "There is no control group here."

He also said caution must always be used when interpreting data from small numbers of patients.

"With a small number, a patient dying one day earlier or one day later can make a big difference," he said. "We can't say that the survival figure is significant or meaningful, because of the small number of participants, the lack of prospective controls, and the fact that standards of care have changed since we acquired our historical data" (meaning better standards of care now may mean patients would have lived longer even without the study drug).

Watching and Waiting

At this time, Cedarbaum says, a much larger trial of high-dose BDNF is under way at 23 centers. That study is a traditional double-blind, placebocontrolled design, meaning patients on BDNF will be compared to patients not on BDNF, with neither patients nor investigators knowing who's on the drug and who's on the placebo until after the results have been analyzed. Enrollment in that study is complete.

At the same time, a large trial of BDNF delivered intrathecally (into the fluid around the spinal cord) is also ongoing at six centers across the country as well as some European locations.

Regeneron and Amgen are partners in developing BDNF. Regeneron is directing the subcutaneous studies, while Amgen is in charge of the intrathecal study.

"All this time, we're doubling our bets," Cedarbaum says. "If high-dose [subcutaneous] or intrathecal work, we may have one or both of those available to patients. We want to see what works best, what's the least expensive, which has the least side effects and so forth. We'll know some time next year about high-dose subcutaneous and intrathecal BDNF, so we'll soon have a lot of information."

For now, he says, "All we can do is watch and wait."

MDA posts information about clinical trials in this newsletter, Quest magazine and on its Web site at: http://www.mda.org/research/ctrials.aspx. 

MANY WITH ALS LIVE LONGER THAN BOOKS SAY

Walter Bradley

MDA Center Director Says Three to Five Years 'Just an Average'

When they first learn they have ALS, people often hear the devastating news that they have an average of three to five years to live.

However, neurologist Walter Bradley, who heads the Kessenich Family MDA/ALS Center at the University of Miami, says this statistic can be misleading.

"About 40 percent of patients live more than five years, 20 percent live more than 10 years, and perhaps 5 percent to 10 percent of patients live more than 20 years," Bradley writes in the spring issue of his center's newsletter. He also notes that, in about 5 percent of patients, the disease actually seems to burn itself out and doesn't advance to affect all parts of the body.

In a recent interview, Bradley elaborated. "Clearly, you can look at all the survival curves of a large number of ALS patients, and there's always a tail [a small percentage] who survive a very long time. Many are badly incapacitated, but not everyone is. There are patients who are extraordinarily slow in their progression over the years."

Almost everyone with ALS knows about British physicist Stephen Hawking, who has lived with the disorder for nearly 40 years.

"I've never examined him," Bradley says, "and the question has always been, 'Is this spinal muscular atrophy, or is it progressive muscular atrophy of the ALS type but really quite slow?' He has clearly progressed to very severe disability but has still maintained some ability to communicate with his computer, write books and do research."

Bradley has been treating a patient who has had ALS since his late 20s and is now 68. He's still able to play golf and enjoy his business.

Another patient of Bradley's, whom he treated some years ago when he was in Vermont, actually saw his ALS get better.

"I confirmed that he had ALS," Bradley said. "I watched him over the years. He got better and better, and I eventually said to him, 'I can't sign your disability papers; you're no longer disabled.'"

Bradley says ALS is "a much more diverse disease than is Duchenne muscular dystrophy. If you look at boys with Duchenne muscular dystrophy, they're basically all similar to one another. The same muscles are involved." In ALS, he says, there's a lot more variability.

So, what's different about some patients that allows them to live longer or even to recover from ALS? "If I knew what that was, I'd bottle it and be a millionaire by now," Bradley says. "Nobody has been able to extract something that's an explanation of why some people progress more slowly or more rapidly or remit. Nobody knows. We wish we did."

Bradley tells his patients that what they may have read may not be what happens in their disease. "What has to be in all of the brochures and information on the Internet is an average. An average is not necessarily what happens to individual patients. It's also important that we now have one drug that slows down the disease, riluzole."

In addition to riluzole (Rilutek), Bradley recommends using assisted ventilation to help maintain respiration and, when necessary, a feeding tube (PEG tube) as a way to maintain nutrition. These treatments can improve the quality of life as well as prolong it.  

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JACK LEMMON TO SPEAK ABOUT ALS ON TELETHON

Jack Lemmon

Academy Award-winning actor Jack Lemmon will appear on the 2000 Jerry Lewis MDA Telethon (airing for 211/2 hours starting at 9 p.m. EDT on Sunday, Sept. 3) to deliver a passionate address about the need to conquer amyotrophic lateral sclerosis (ALS).

The Lemmon segment was videotaped in Los Angeles on April 26, at which time Lemmon also recorded for MDA a 30-second television public service announcement about ALS, intended for broadcast by TV stations and cable companies across the United States.

The renowned actor is quite familiar with ALS, having portrayed Morrie Schwartz in the 1999 ABC-TV movie "Tuesdays with Morrie," based on the best-selling book by Mitch Albom. Schwartz was a college professor in the latter stages of ALS who continued to impart life lessons to Albom, a former student, despite the devastating effects of the disease. Schwartz died of ALS in 1995.

"This is a four-alarm fire, an emergency," says a visibly emotional Lemmon in the new Telethon segment. "We have to support the research and stop this damned disease once and for all." A clip from a 1978 Telethon appearance in which Lemmon read a letter written by a man with ALS will be incorporated into the new segment.

Many other celebrities, from Angela Lansbury to Ricardo Montalban, have appeared on the MDA Telethon to speak about ALS. Pledges to the Telethon support MDA's programs in research and medical services to make life better for people fighting ALS and other neuromusculardiseases.  

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BRUCE STEVENS: FIGHTING FIRES AND ALS

Bruce Stevens

For the International Association of Fire Fighters, the tradition of raising money to help MDA goes all the way back to 1954. Fill-the-Boot is the IAFF's signature campaign event, in which fire fighters greet motorists, shoppers and others and ask them to drop donations for MDA into fire fighter boots.

The program - which in 1999 helped the IAFF raise $13 million in North America to support MDA - has had a huge impact on MDA's ability to help people with ALS and other neuromuscular diseases.

As a longtime fire fighter and IAFF member, Bruce Stevens of Charlotte, N.C., has participated in Fill-the-Boot for close to a quarter of a century. He was happy to take part in the but didn't know much about the organization he was supporting. He assumed that funds raised for MDA were used exclusively to help children.

Stevens, 49, learned otherwise when he became eligible to benefit from MDA services himself. Several years ago, he received a diagnosis of ALS.

Trained to Fight Fire

Stevens, who grew up in Long Island, N.Y., entered the Air Force at age 18 and was trained as a fire fighter in Florida.

Upon his discharge, he was a fire fighter in Florida for about five years, before relocating to North Carolina. There he worked as a fire fighter for the city of Charlotte as a member of IAFF Local 660. Stevens and his wife of 25 years, Jerri, have two children, Vanessa, 19, and Aaron, 16.

After undergoing surgery for back and neck problems about five years ago, Stevens felt he wasn't recovering the way he hoped. He was experiencing a number of unexplained symptoms, including weakness in his left arm and shakiness in his hands. He consulted a neurologist in 1997 and initiated the process that led to the ALS diagnosis, which was made official in January 1998.

Stevens now attends the multidisciplinary MDA/ALS Center at Carolinas Medical Center in Charlotte, where he's seen by the center's director, Jeffrey Rosenfeld.

"Every three months, we go into the clinic for an evaluation and see a whole panel of different types of therapists," Stevens says.

Stevens' speech isn't appreciably affected by ALS and he continues to be ambulatory.

Evolving Duties

He continues to work for the Charlotte Fire Department, although now his duties are in the realm of paperwork in the Fire Prevention Bureau. Prior to ALS, he was a captain on a fire truck, leading other fire fighters into life-threatening situations. The loss of strength in his arms has made it impossible to continue those duties.

"There's no way I could ride the truck anymore," he says with noticeable regret. Currently he's making sure the department has accurate records of city fire hydrants. That means updating computer files and serving as a liaison between agencies.

He also serves as a liaison with MDA. Unfortunately, because of liability issues, the Fill-the-Boot program has been suspended by the city of Charlotte for the last several years. Stevens, his fellow IAFF members and MDA staff are determined to overcome the legal complications and get the program up and running again. Stevens doesn't hope to retire any time soon.

"If you retire on your own terms, then you have time to come to grips with it and prepare for it," he says. "But when it's forced upon you by some outside influence, it's different.

"At home, my wife and kids have had to pick up some of the slack in terms of things that I used to do," he says. "On yard work and things like that, my son's been real good. But now instead of being able to show him how to do it, I have to talk him through it. It's a little bit harder."

Keeping the Focus Positive

Through the Carolinas Center, Stevens is participating in the trial of BDNF (brain-derived neurotrophic factor) as a potential treatment for ALS. In this study, the substance is delivered directly into the cerebrospinal fluid via an intrathecal pump. Because of the double-blind nature of the study, subjects don't know whether they're receiving a placebo or the actual substance.

Stevens has been participating in the trial for over a year. He's hesitant to speculate about whether he's deriving any physical benefit. He's grateful, though, that his ALS seems to be running a slower course than most cases.

Since the ALS diagnosis, MDA has prevailed upon Stevens to speak at a number of functions, including IAFF events. When speaking to fire fighters, he concentrates on what the disease has done to him as a fire fighter. His efforts recently resulted in a special honor.

"I got a letter from the president of the 12th IAFF district in South Florida, where I spoke," he says. "Dade County is going to dedicate their Boot drive this year to me."

"I've got great support from my family, but also from my friends and my church," he says. "The support that I get physically, emotionally and spiritually is just great." 

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Eyegaze Computer - A Window Into the Mindby Dave Feigenbaum

Here are two firsthand accounts by people whose vocal powers were affected by ALS. Both found ways to use computer technology to communicate - one to those nearby, and one to old friends far away.

Dave Feigenbaum

The other day Rachael, my son's wife, came by to visit. We tried to have a conversation - she talked and I nodded. Occasionally, I even tried to say a few words, which my caregiver interpreted. It was very one-sided.

Afterwards, Rachael said, "I really like your e-mails. It seems like the old you talking."

I thought, "Well, I'm the same inside. I haven't really changed at all, but in person no one can tell." I was diagnosed with limb-onset ALS in October 1996. Lately, my speech is just about gone and, a few months ago, I got an Eyegaze system from LC Technologies. Frankly, I don't know if I would have the will to go on without it. Now, it's the window to my mind and I use it to communicate with my family and friends just about every day.

The Eyegaze system has keys displayed on the screen, which I can "press" by looking at them. A small infrared camera measures where my eye is looking. The words I spell out this way appear on the screen or are spoken out loud.

E-MAILING THROUGH THE DAY

I have two married children, four grandchildren and my wife's parents, all on e-mail. I even e-mail my wife at work. Only my sister in Florida lacks a computer and I type her hard copy letters once a week and mail them off.

When I can manage it, my routine is to go on the computer about 11 a.m. and read my e-mail. I reply to some and generally compose a chatty note for the immediate family. It might be about how I feel, about my plans for the day, a show I enjoyed on TV, etc. The kind of thing I would say on the phone, if I could. (We have speaker phones throughout the house and I hear their questions.)

It's also the time to address more serious concerns - such as how I feel about my recent tracheotomy and being on the ventilator. After that, I may e-mail someone about a specific thing:

To my wife, Lynn, "Don't forget to call Dr. - about my dizziness"; or to my son, John, "Relax, these are your good times. One day you'll look back and realize it." To my wife's 92-year-old father, "Dad, you can't expect the stock market to go up every day."

I also have friends and family around the world as well as PALS (people with ALS) and family of former PALS (from the book I compiled last year, Journeys With ALS), whom I keep in regular contact with.

SPEAKING AND WRITING

I prefer Eyegaze over other communication systems I've tried.

Lip-reading only works if the subject is familiar. The other person has to know about what you're trying to say. If I want to talk about something new, I need the Eyegaze. So, we'll go to the computer and have a conversation. The keyboard has a "speak" key, and I simply type out what I need to say.

This is particularly helpful if a friend comes by. Often they will start by saying, "What's new?" or, "How do you feel?" It's the only way to have a meaningful discussion, which I have always liked.

About a year and a half ago, when my speech started going, I tried a system that relied on an infrared switch aimed at some muscle movement.

At first, we aimed it at my eyelid and I would wink. My facial muscles quickly fatigued, however, and we couldn't keep it adjusted. Then I switched to a sideways knee action and this worked for a while. Still, it was frustratingly slow - I could only manage a few sentences at a sitting, even with word prediction. And my hip became sore from the repeated motion.

In the afternoon, about 2:30 or 3 p.m., I come back to the computer and write. I like to write. Always have, going back to my days as a professor of marine biology at Old Dominion University in Norfolk. There I wrote scientific papers. Later, when I became a numismatist, I wrote coin books.

So, when the infrared switch no longer worked for me, I tried dictating to my caregivers. They understood me as well as anyone. However, my diction was so poor that I was forced to limit my vocabulary and to stick to simple sentences. It just wasn't me writing. (And that didn't last anyway. With time, my speech kept getting worse.)

I knew abut the Eyegaze from other PALS. I knew that the eye muscles, for some reason, are almost unaffected by this illness and this was the system you come down to, if you can afford it. It's pretty expensive - more than $15,000, and probably not covered by most insurance policies.

However, to me it's not a luxury. It's the window to my mind.  

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Internet Reunion - A Roadmap to Old Friends

Eddie Burroughs and Jan Blaustone

My Uncle Eddie wrote this article to encourage others with limiting physical circumstances to explore the possibilities of the Internet and e-mail correspondence.

An inspiration to strangers and friends alike, Eddie never felt cheated by his diagnosis of ALS. On the contrary, he felt happy about his 69 years and regretted that many of the thousands of youngsters served by MDA wouldn't have so many years to experience life.

Eddie died suddenly on April 19 from complications of pneumonia, one week after completing this piece. He was content in knowing it would be published by MDA - his final mission. His friend Dick Mauer accepted Eddie's request to spread his ashes over his beloved Lake Tahoe. As much as we'll miss him, Uncle Eddie's spirit remains bright via his writing, and it's with great pride that we share his message of encouragement with you.

Jan Blaustone & Family
by Eddie Burroughs

While celebrating my 69th birthday in May 1999, I told everyone present I was giving myself a birthday gift of an August trip to Texas to renew some long lost friendships. Unfortunately, my health changed those plans.

I was diagnosed with ALS the following month. I had first noticed its effects the previous September when my speech began to slur while volunteering on the Nashville broadcast of the MDA Telethon. I had volunteered on the phone banks for several years but, that year, my voice grew tired rather quickly. (I first got involved with MDA because my nephew Michael's wife, Jan Blaustone, has muscular dystrophy and is a volunteer MDA leader in Nashville.)

Although my other voluntary muscles showed no signs of deterioration, my voice slurred so badly that, by early summer, I wasn't able to articulate.

HOW TO COMMUNICATE?

I felt devastated about losing my ability to communicate. Because of my bleak prognosis, I wanted even more to track down my buddies from long ago, but wondered how on earth I'd be able to accomplish such a task with no voice.

That was when the MDA Nashville office came to my rescue. Just a month after my diagnosis of bulbar-onset ALS, I walked into Michael and Jan's kitchen. On the table was a computer, with the message, HAPPY BELATED BIRTHDAY, EDDIE, FROM MDA, on the monitor.

If it had been a pot of gold, I couldn't have been happier. As it turned out, Jan had placed my name on the MDA loaner closet waiting list and she'd purchased the necessary hardware and software to enable me to get online.

After a week of sitting in front of the computer learning its many aspects of operation and discovering its various search engines, I knew I could still have my reunions and I was anxious to begin.

First, I made a list of seven great friends from over 20 years ago whom I wanted to contact. The following two weeks I did nothing but enter their proper names and variations of their names with several search engines like HotBot and Yahoo and Internet Service Provider (ISP) directories like AOL and ATT. They provided me with several related Web sites and e-mail addresses.

From there, I e-mailed the names that corresponded with the states I thought my buddies were living in. For example, there were 67 "Bill Fords" on one particular ISP but only eight in Texas, so I sent those a message asking if they remembered me. When a name didn't appear on the Internet, I used the U.S. Post Office Web site to look up a physical address and wrote them via regular mail.

A week later, I had responses from all seven of my friends, and all of them had computers.

CATCHING UP WITH OLD FRIENDS

I hadn't seen Phil Sanders, my high school tennis teammate, since 1964. Now I found out he was a judge in Austin, our hometown. Like the others, Phil was surprised and saddened to hear of my diagnosis and mentioned he'd lost another good friend to the disease recently.

Ray Pesson, my best friend in the Navy, was my next reunion. We served aboard the same ship during the Korean War, visiting such places as the Virgin Islands, Greenland and Casablanca. The last time I saw Ray was in 1965.

With my fraternity brother at the University of Texas, Glenn Garrett, I "talked" about the good times we shared, like the time we went to dinner with his parents and I convinced my date that the rhinestones Glenn's mother was wearing were diamonds. "She fell for it and even asked Mom if she could look at them," Glenn reminded me. I still enjoy practical jokes.

Glenn sent me an e-mail address for another fraternity buddy, Fred Bunsen. Fred e-mailed scanned photos from our days together.

I also found Larry Graham, a friend I'd made while working as a counselor and tennis instructor at a private summer camp during college. I located Larry by looking up the camp address in the online Yellow Pages. After graduating from the U.S. Naval Academy and five years of service, Larry had run the camp with his wife for 15 years, so it was no wonder they knew his whereabouts.

My other good friend from camp was Larry Shewmaker. Years later Larry and I competed in state tennis tournaments together. Larry reminded me about one of them with this e-mail:

"Remember the Victoria Open? After the tournament in McAllen, Texas, we crossed the border and purchased some Oso Negro gin. You split sets in Victoria in the semifinals. It was very hot and you motioned for me to get you some water in a tennis ball can. I put a lot of ice with water and some gin in it. You played loose but brilliant tennis the third set and won. You never knew why you felt so bad the next day. We wrote it off to heat exhaustion."

After leaving Texas, I lived in Lake Tahoe, Nev., for 14 years working in hotel/casino management. It was there I met my very best friend, Dick Mauer, a bartender at the time. We did a lot of deer hunting together, played golf and tennis, and threw some memorable dinner parties. The last time I saw Dick was in 1982 when I left the lake for New York. But through e-mail, Dick and I "talk" like it was just yesterday.

I now have 17 e-mail addresses of great friends from the past, which make my days much brighter. Every new day brings an e-mail from at least one of them. It makes me feel good to know they're concerned and haven't forgotten about me or our great times together. 

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NINDS DIRECTOR ADVOCATES COMBINED APPROACH IN ALS RESEARCH

Researching a variety of approaches might be the best way to find treatments or a cure for ALS, a top government scientist recently told a Senate subcommittee.

Gerald D. Fischbach also said there's reason for optimism in the fight against Lou Gehrig's disease, in his May 18 testimony before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, which held a hearing about ALS research.

Fischbach, a former MDA research grantee, is director of the National Institute of Neurological Disorders and Stroke (NINDS), a branch of the National Institutes of Health. He received MDA funding for studies of the interactions between muscles and nerves from 1992 to 1994 when he was at Harvard University.

The NIH, the government's medical research arm, will spend $20 million of its $2.7 billion budget this year on seeking a cure for ALS. NIH funding for ALS research has steadily been increasing over the years.

In his testimony, Fischbach explained the progressive effects of ALS and the basic biology of the disease. He also outlined the mysteries scientists are trying to solve: why motor neurons die in ALS, why the disease selectively affects motor neurons and spares other cells, what triggers the disease and how to stop its progression.

DEVELOPING NEW WEAPONS

Fischbach told the senators that "a combination of approaches may well be the best strategy" in the hunt for a cure.

That means continuing to pursue several types of promising therapies: drugs or drug cocktails, interventions like stem cell transplants or gene therapies, and developing better means for delivering therapeutic agents such as drugs, cells and genes.

"The best strategy to find a cure for ALS is to support a broad research program, including research focused on ALS, on common themes in neurodegeneration, and on fundamental neuroscience with an emphasis on the best quality science," he said.

MDA allocates some $3.5 million a year to ALS research and supports scientists working in all the areas Fischbach cited.

Pharmaceutical companies are heavily invested in robotic technologies called "high throughput screening" that accelerate the development of new drugs, Fischbach said.

But, he said, "private companies are less likely to focus on relatively uncommon disorders such as ALS. NINDS is trying to find the best ways to put this technology in the hands of researchers who are focusing on ALS and other neurological disorders."

ENHANCING ALS RESEARCH

NINDS has taken steps to boost research on ALS, including grant solicitations, workshops and informal discussions with the research community. For example, in March, NINDS set aside $3 million to fund novel approaches to understanding and treating ALS, spinal muscular atrophy and other disorders whose fundamental feature is a loss of motor neurons.

Fischbach said that "several of the more broad NIH efforts to provide access to emerging technologies will be important to ALS research," helping to speed and sharpen scientific efforts. He ended his comments on a hopeful note.

"Most researchers, energized by progress in fundamental neuroscience, about neurodegeneration in general and on ALS in particular, feel a cautious optimism that stopping ALS and other neurological disorders is a realistic goal.

"We share that belief and will continue our efforts to speed the day when we can better treat, cure and ultimately prevent ALS."

To read more about Fischbach's testimony or NINDS, visit www.ninds.nih.gov. 

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MDAchat Is Under Way

It's time to chat! MDAchat, the latest addition to MDA's Web site, was officially launched this month. MDAchat offers those affected by ALS and other neuromuscular diseases, their families and others an opportunity to "speak" to each other online.

Check the MDAchat Calendar at www.mda.org/chat/calendar.html to find the chat session of most interest to you. Upcoming sessions will focus on ALS and related subjects. Other topics include research, physical therapy, ventilation, adult concerns, career and workplace issues, travel and recreation, day-to-day living and more.

All chat sessions are scheduled to allow participants to use their online time most effectively. Transcripts of chat sessions will normally be available online within seven days after sessions are completed. MDA is still seeking people to form chat leadership teams to assist ongoing groups or cover specific topics. Leadership applications are available on the Web site.

E-mail questions or suggestions to mdachat@mdausa.org. 

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LETTER FROM ED FRY

Ed Fry

Dear Sir:

My name is Ed Fry. I served for some years as national chairperson of MDA's ALS Division. I continue to serve MDA as a national vice president. And I still lend a hand (as co-host) on the New York broadcast of the MDA Telethon.

In 1986, my mother was diagnosed with ALS. It was a difficult diagnosis to make. She went to a number of reputable hospitals and research centers. But when the final diagnosis came, we were sent home with very little information. She lived in a small town in southwest Iowa, and I was living in New York, working in television.

We contacted the ALS Association, which sent material that was of some help. But it was very technical and hard to understand and didn't seem to address where my mother was at the time.

Some time later, I was asked to participate in the New York MDA Telethon because of a part I was playing on TV. I agreed, knowing that MDA was a good organization and worthy of my time. It was at the Telethon, however, that I found out just how good an organization it was and how much they could do for me and for my mother. I didn't know walking in that MDA helped people with ALS.

That was the beginning of a long relationship with MDA. They helped us through many difficult places, not only with printed material but with hands-on help from program service coordinators. This was help we understood and needed.

While my mother never got to see the short film that MDA made about her (or the prize it won at the New York Film Festival!), it remains as a testament to her willingness to share herself at her most vulnerable in order that others might know about ALS and donate towards its cure.

That was almost 14 years ago. Things have changed dramatically since then. MDA sponsors 20 ALS research centers across the country, offering a wide array of services at no cost. While I know of other organizations that raise money for ALS research, I know of no other that provides the depth of medical care, research and education that MDA provides. They're great people to have in your corner. I encourage you to make the most of the relationship.

ALS is a tough disease, no doubt about it. In a manner, everybody in your family gets it. But that can also be a blessing. It brought my mother and me closer. I have seen this happen again and again, families drawing on communal resources to solve problems as they arise. If there is a silver lining, I believe this to be it.

When Virginia was ill, we didn't have e-mail or the Internet. Out in the cornfields of Iowa, I wish we had. Just know that many, many people are working on unlocking the secrets of ALS, people you may not have met, but they are there, busy and working hard. Many more continue to involve themselves in fund raising and education, enabling the researchers to do their jobs. We all have work to do to make sure as many people as possible know about ALS and contribute to its cure.

Sincerely,

Ed Fry

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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.

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