Clinical Trials Are Focus of MDA ALS Conference

Researchers and physicians from North America, Britain and France will gather in Tarrytown, N.Y., June 13-15 under the auspices of MDA, the National Institutes of Health and Columbia University. Their plan: to improve and speed the implementation of clinical trials in ALS.

The conference, titled ALS Clinical Trials — The Challenge of the Next Century, will commemorate the 100th anniversary of the birth of Lou Gehrig, famed Yankees baseball player who died from ALS in 1941. A tribute to Gehrig, whose birthday is June 19, will be presented by Ray Robinson, author of Iron Horse: Lou Gehrig in His Time, (W.W. Norton, 1990). (See "Remembering Lou Gehrig.")

Hiroshi Mitsumoto (top) and Serge Przedborski, both members of MDA’s Medical Advisory Commitee, will chair the conference.

Hiroshi Mitsumoto and Serge Przedborski, co-directors of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia Presbyterian Medical Center in New York, will chair the proceedings. Mitsumoto said the organizers hope the conference will "change the way ALS trials are conducted, and break the ALS research ‘bottleneck’" that occurs when promising treatments in mice fail to yield similar results in humans.

The tightly focused agenda includes sessions on:

• interpreting findings in animals when planning human interventions

• building on knowledge gained in clinical research in other diseases, such as AIDS, cancer, Parkinson’s disease and strokes

• advantages and disadvantages of various types of clinical trial designs

• measuring the biological effects of experimental substances

• trials involving more than one drug

• funding of clinical trials

• exploring formation of a national ALS study group from existing regional groups

Several directors of MDA’s 29 ALS centers will be among some 50 scheduled speakers.

Information about the meeting can be found at cpmcnet.columbia.edu/dept/ cme/Neuro-PM-45-03/Neuro-45-03.html, and MDA will post frequent reports at www.als-mda.org.

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Support, Empowerment Keys to Social Worker’s Role at MDA/ALS Center

Talking With Nancy Xenakis

	Nancy Xenakis is a certified clinical social worker at Mount Sinai Medical Center in New York, where she devotes most of her time to the MDA/ALS center.

by Margaret Wahl

Q: What is the role of the social worker on the ALS clinical care team?

A: A medical or clinical social worker on an ALS care team really has a twofold role: First, there’s the counseling component; and second, there’s the "case management" component.

I see the counseling part as being able to provide a safe environment where patients and caregivers can discuss their thoughts and feelings and receive emotional support.

The case management part entails obtaining the necessary resources for patients and families, as well as helping them to navigate through the complex systems that exist in today’s health care environment and advocating on their behalf.

Q: Do people readily accept the idea of a social worker in the ALS clinic?

A: It can be hard for people to admit that they need help, whether it’s from family and friends, a support group, social worker, or professional association like MDA. But seeking assistance in whatever way is needed is a good strategy.

Q: How does a person with ALS or his or her family arrange to see a social worker?

A: That depends on the institution, of course. But here, the physician would explain the MDA/ALS center program and its purpose and how it could benefit the patient and family.

The program here is multidisciplinary, including medical care, nursing, speech therapy, occupational therapy, physical therapy, social work services and MDA services. When patients enroll in the program, they automatically see someone like me during their visits.

Q: In your experience with people who have chronic diseases, what factors help them and their families to cope?

A: With a chronic, degenerative illness like ALS, it’s important not to think too far in advance and speculate about the future but to stay focused on the here and now. I also think it’s important that people know when and how to seek help.

And staying as active as possible in all areas — physically, mentally, socially and emotionally — is critical to obtaining maximum health.

For instance, we have one patient who recently went to a nursing home. It was a very difficult transition for him; most of the other residents are much older than he is and not very coherent.

But he’s made the best of it by developing relationships with the staff, and he’s now doing staff education on ALS. He uses the MDA materials as handouts and has conducted in-service programs with the staff. They’re grateful, and he’s staying involved.

Then there’s another man with ALS in our program who used to be on a sports team and unfortunately can’t play anymore. He’s now a coach for the team and is excited about the season starting up again. He enjoys the recreation and the competition, and even though he’s no longer able to play, he’s still engaged and able to help the team in another way.

Q: I understand that your group at Mount Sinai is starting a new program that involves "complementary" or "alternative" medicine techniques.

A: Yes. It’s called We CoPE, which stands for Wellness Complementary Program for Empowerment. It’s a comprehensive program to enhance wellness in people with chronic neurologic diseases, their families and caregivers.

We’re now looking at funding possibilities through foundation or other grants to defray the costs for these services, which are not reimbursable by insurance.

Q: What does the program consist of?

A: The program, which is slated for two hours, one evening a week for a six-month period, will involve an individualized plan for each person with a core set of activities and some elective activities.

We plan to offer chiropractic treatments, acupuncture, nutrition counseling, yoga, exercise, massage and imagery. We’ll also offer two Eastern techniques called tai chi and qigong that involve postures, breathing and mental techniques to help control stress and guide energy.

There’s also a social component. Patients who need assistance coming to the program will be accompanied by caregivers and/or family members, so we’re opening up the program to them as well. They have the option to participate or wait in the waiting room. Either way, both patients and caregivers are likely to meet informally and socialize with other people at the center.

Q: What was the impetus for We CoPE?

A: The program’s concept was developed by Dr. Lange [Dale Lange, co-director of the MDA/ALS Center at Mount Sinai], who had done some reading on complementary medicine and decided to try to enhance the overall health and sense of well-being of our patients by combining traditional Western medicine with complementary medicine approaches.

Q: How did you get involved?

A: I was hired to be the administrative coordinator for this program as one part of my job.

I also offer general social work services to patients and family members at the MDA/ALS center here, and I’ve recently started a group offering education and support for caregivers.

Q: How do you think complementary medicine will help people with ALS?

A: I think that doing things that are constructive and being part of a program is healthy for patients. I think it’s a way to engage them on a variety of levels. A lot of these modalities are physical, so they’re keeping muscles working as much as possible.

They’re also part of something, seeing other people and perhaps sharing this experience with their caregivers.

Many people like the feeling that they’re doing something in addition to traditional Western medicine that may be helpful.

Frankly, I can’t imagine that it would not improve quality of life. Specifically, we’ll be doing a pilot program and then adjusting it based on feedback from participants and practitioners. We’ll be using a quality-of-life questionnaire as a measurement tool.

Q: How would you describe your main focus in the ALS program?

A: I try to empower patients and families, to create an alliance between us. My role extends well past the clinic visits. I’m available to talk with people, on the phone or in person, beyond clinic hours, and I try to keep the lines of communication open between me and the patient or family member.

For information about the We CoPE program, call Nancy Xenakis at (212) 241-6049, or send e-mail to nancy.xenakis@mssm.edu. The We CoPE Web site is www.mountsinai.org/ msh/clinical_services/ wecope.htm.

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A NEW LIFE WITH ALS

Our Network of Support

by Steven and Jennifer Bishop

After emphasizing the importance of support groups in last month’s column, we thought it appropriate to expand upon other aspects of support in our lives. The idea of accepting help isn’t comfortable for us and the prospect of asking for it is even more difficult.

Many of you who are facing ALS may at first resist the idea of asking for help, as we did. But we’ve found, through the thoughtfulness of an incredible network of friends and family, that people want and need to help others, including us.

People feel helpless when they see another hurting and are unable to assist them. After our diagnosis, countless people asked what they could do to help. Physically, because there weren’t a lot of immediate changes, we didn’t have a lot of requests for them.

We decided to move from our two-story house into a ranch-style, single-level home before we had to do it for the preservation of Steven’s leg muscles. The prospect of moving is never a fun one, but we were overwhelmed when some of Steven’s former co-workers from Sprint Communications coordinated with Graebel Van Lines to donate a moving package that included the laborious task of packing. We enthusiastically said yes to help in this form — and those who put this gift together seemed to get genuine pleasure in doing so.

On a person-to-person level it’s a little different, and we’re still learning. People in our network would offer to help in many aspects of our daily life. At first, we felt like we didn’t want to inconvenience anyone by accepting.

What we didn’t realize is the power of letting someone help and the mutual benefits doing so provides. We’re not talking about the full-blown tasks of personal caregiving. Mowing the lawn, grocery shopping, babysitting and moving heavy objects are just a few of the things that make a huge difference to us at this stage of the illness. It’s been our experience that when people are given the opportunity to help, it actually makes them feel good to play a part in fighting ALS.

It took us a little time to figure that out. Shortly after we were diagnosed, we were asked by our local MDA staff if we’d like to attend a fund-raising Lock-Up. While there, we introduced ourselves to the participants as clients of MDA and personally thanked them for what they were doing. And our gratitude was returned severalfold when we could see in their eyes the recognition that their efforts were making a difference on a personal level. Thanking them made us feel useful and appreciated, as well as grateful.

It’s important for us to remember that, just because someone offers help at one time, it isn’t guaranteed nor do we expect they can do the same things six months down the line. People’s lives are constantly changing, and we don’t try to "save" offers of help until we think we really need them.

When people learn that you have an ALS diagnosis, your relationships will change. Some people won’t know how to interact with you, but others’ devotion and caring will pleasantly surprise you. In our case we’ve been very fortunate to have both emotional and physical support come from more directions than we could have ever imagined.

As Steven’s symptoms progress, it wouldn’t surprise us if many of the people in our current support network become part of our "Share the Care" circle. These relationships are invaluable when dealing with ALS for reasons we’re still realizing. We’ve discovered that help is out there in places we would never have expected to find it. But it’s our responsibility to let the help happen.

Steven and Jennifer Bishop are co-chairpersons of the ALS Division of MDA. Steven received an ALS diagnosis in March 2001. The Bishops live in Arvada, Colo., with their 5-year-old son, Christopher.

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Proposed Legislation Addresses Caregiver and Home Care Needs

Like perennial flowers, several bills thought dead last winter have rebloomed this spring in both the U.S. House and the Senate.

David Jayne Medicare Homebound Modernization (Reform) Act

Bills have been introduced in the Senate (S. 598) and the House (H.R. 1874) for the third year. Similar bills died last session due to lack of congressional action.

The House bill seeks to establish a "demonstration project" — basically a two-year trial period — in which Medicare beneficiaries with permanent, severe disabilities may receive "homebound" home health care services regardless of how frequently they leave their homes. Current rules require all "homebound" beneficiaries to remain in their homes, except for brief, infrequent absences for approved activities.

Lifespan Respite Care Act

On April 10, the Senate unanimously approved this bill, which is now being considered by a House subcommittee. The bill would fund state and national respite programs to help caregivers get affordable and high-quality respite care. In addition, the programs would provide for emergency respite, training and recruiting of respite care workers, and training of caregivers about respite care. Respite care gives family caregivers short breaks from the demands of ongoing care of a loved one.

Medicare Community-Based Attendant Services and Supports Act (MiCASSA)

This bill refuses to stay down, despite several failed attempts at passage in previous years. It was introduced this spring in the Senate (S. 971) by Sens. Tom Harkin (D-Iowa) and Arlen Specter (R-Pa.) and in the House (H.R. 2032) by Reps. Danny Davis (D-Ill.) and John Shimkus (R-Ill.). The bill would require state Medicaid plans to provide community-based attendant services and supports, effectively allowing those eligible to get services in their own homes rather than having to go to nursing homes for long-term care.

Members of Congress are often receptive to letters, e-mails and phone calls encouraging them to co-sponsor or support a bill. For information on contacting your senator or representative, look for a local listing or go to www.senate.gov or www.house.gov.

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‘Share the Care’ Circles: Who’s Going to Do What?

Share the Care circles are groups of volunteers who provide organized, long-term, in-home caregiving support for people with diseases like ALS. Part 1 of this series, published in May, looked at the basics of starting a circle. The Share the Care concept comes from the book Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock (Fireside, 1995).

by Christina Medvescek

A key to a successful Share the Care group is matching the right person with the right job. The easiest way to do that is to simply let people do what they like.

During the initial organizing meeting for a Share the Care group, volunteers learn about the family’s specific needs. They then indicate on a form which tasks they like, love or hate, and the time commitment they feel comfortable making. Jobs are assigned and schedules drawn up based on this information.

"It’s so important that the leader of this meeting dispel the belief that any one person would have to do anything they didn’t want to do, nor would they ever be the only person doing something for their sick friend," emphasizes Suzie Cowan, who organized a caregiving circle for her friend with ALS, David Jayne of Rex, Ga.

"If you give people a task they’re suited for and are comfortable doing, they lose their fear of getting involved," she adds. "Give them a group to work within, a structure to fit into. Give them an opening to say yes or no — and oftentimes they come back with an even better suggestion of a way they can help."

Velda Fox, 46, of Nashville, Tenn., agrees completely. Fox has an unofficial circle of volunteers who came together after she learned she had ALS in September 2002. She finds that people "just fall into what they are good with. [You have to] notice what people are naturally drawn to. When people are asked to help with something they enjoy, it lessens the burden for both parties."

Odd Jobs and Massages

		The late Mark Reiman, shown with his wife Julie and son Josh, said his family greatly benefited from an active Share the Care group, both through practical daily help and "powerful life lessons about giving and receiving love."

What kind of help can a group of untrained relatives, friends and neighbors provide? In Mark Reiman’s case — and for many others with ALS — Share the Care circles provided practical and emotional support for the entire family.

Because his wife, Julie, worked part time, Reiman needed volunteers who could spend chunks of time at his home in Everett, Wash. Two years ago, close family friends organized a Share the Care group that kept his needs covered and allowed Julie to keep working. (Reiman, who lived 12 years with ALS, passed away April 29. He was 49.)

On Monday mornings, a retired nurse who used to sing in his church choir came by to do range-of-motion exercises and visit. On Monday afternoons Reiman’s brother-in-law, Rey Guajardo, helped with bathing, dressing and tube feeding, then would watch movies with Reiman or hang out while he worked on the computer. Guajardo left at 5 p.m. and two volunteers alternated covering the two hours before Julie got home.

Julie usually was home on Tuesdays. On Wednesdays, Guajardo came back in the morning, then another choir member came in the evening. She would feed Reiman, take him for a massage or rub his feet.

Thursdays were "David Days," when a retired family friend, David Haynes, spent two to four hours with Reiman. While at the house, Haynes sometimes did odd jobs and gardening, or took Reiman out to the store or a movie.

On Fridays, Reiman’s brother, David Reiman, spent the entire day, telecommuting to his job via computer from the Reimans’ home.

In addition to these steady helpers, "free floaters" came by on weekends to take Reiman to the movies or church. "From a caregiver point of view, I loved it when he got to get out and I got to be alone in the house," Julie says. Special needs — such as hanging the outdoor Christmas lights — also were handled by free floaters.

"They’ve made it possible for me, my wife and children to live richer, fuller lives," said Reiman in an interview shortly before his death. "I’m pretty sure if the group members were asked, they would say their lives have been enriched too."

Flexible Scheduling

About 30 volunteer caregivers provide regular help for David Jayne, who uses a ventilator and has a paid live-in caregiver. Cowan, who has coordinated the circle long-distance from her home in Memphis for the past three years, makes 30 to 40 phone calls to fill in each three-month schedule.

Quarterly schedules give people more choices of times to help. "This way most people just help once a quarter," she says. "Typically someone will clean his house four times a year, or cut the grass once or twice during the growing season."

People usually aren’t locked into a set date, but have a range of time in which to do a job. "We just ask that they call and say when they’re coming over."

Weekly grocery shopping is split up each month among five women. Scheduled volunteers bring by occasional meals, especially when Jayne’s children are visiting. Free floaters put together birthday celebrations for his children or decorate his house for Christmas. One woman shampoos his carpets each spring.

About 60 volunteers sold cookie dough and solicited funds for an Eyegaze computer system. And several volunteers have helped Jayne go to Washington, D.C., where he’s lobbied Congress to make changes in Medicare home health care rules.

Most of all, volunteers give Jayne something to do. "They always make time after doing the job to have a conversation with him, which is what ‘changes his scenery’ most of the time," Cowan says. "It’s not just come in, do the job and leave."

COMING UP:

Keeping a circle going over the long term

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Wyoming Artist Rides Into the Wind

by Bill Greenberg

The arrival at MDA headquarters of "Have Wheels, Will Travel," an original acrylic painting by Katy Hinckley of Laramie, Wyo., was cause for celebration — and not just because it’s a delightful painting.

"Have Wheels, Will Travel"

Hinckley’s "Wheels" has the distinction of being the 300th piece of artwork accepted by the MDA Art Collection, and the 16th piece created by an artist with ALS. The Art Collection features works by artists from across the country who have neuromuscular diseases.

Katy Hinckley

Hinckley, 47, was a lecturer on communication and journalism at the University of Wyoming when she received a diagnosis of ALS in January 2002. She and her husband, Peter Hegg, decided it was time to get serious about the adventure trips they’d talked about taking "someday."

So the couple joined fellow Harley-Davidson enthusiasts Morgan Cromer (Hinckley’s sister) and her husband and hit the road.

"I purchased a convertible wheelchair/stroller that could be folded and carried on the back of the motorcycle," she explains. "We put the bikes on a trailer and the wheelchair on the bike and hauled them all to Las Vegas where we spent four days touring the countryside."

An avid artist since high school, Hinckley commemorated the trip by painting "Have Wheels, Will Travel." The piece depicts the various wheels in Hinckley’s life, including those from her Convaid Convertible chair — complete with travel bag for the larger wheels — and the wheels from the couple’s Harley-Davidson 2003 Heritage Softail Classic and 2002 Sportster motorcycles.

More Than Just ‘Clumsy’

Hinckley suspects signs of her ALS may have been present as early as her teens.

"Although no doctor buys it, I believe it’s been with me since my teen-age years," she asserts. "I’ve been ‘clumsy’ since about age 14. My right leg gave out frequently when I tried to run, and I’ve always had holes in the knees of my pants from falling down."

Over the years, as Hinckley’s falls became more frequent, so did her doctor visits. In recent years, she began wearing a brace to counteract her footdrop and using a walking stick for balance.

"I was as depressed at the sight of the brace and its resulting effect on my wardrobe as I was about not knowing what was wrong."

An avid Web surfer, Hinckley used the Internet to add to the information she received from her doctors. In her mid-40s, she got the ALS diagnosis.

"I’d actually figured out what was wrong before the diagnosis," she asserts. "So I had the weeping, I-don’t-want-to-die reaction several months ahead of time."

Toasting the New Year

At the time of her diagnosis, "my neurologist told me that I would probably not last two years," she recalls, adding that she’s "not in denial but not accepting that prognosis."

She now goes for medical care to the MDA/ALS Center at the University of Colorado in Denver. She’s still partially ambulatory with the help of the brace and cane, and uses the stroller at times.

On April 30, Hinckley was officially "terminated" from her teaching position — a move that university officials told her was necessary so she could receive long-term disability benefits.

"It was kind of a slap in the face for me but I guess that’s just the way things go," she says.

These days, Hinckley divides her time between painting and surfing the Internet. Her husband owns an insurance agency, and between the two of them, they have seven grown children.

Hinckley and Hegg also have taken an interest in fine wines.

"We’ve saved a couple of really special wines to celebrate my survival anniversaries each January," she relates.

The couple is also planning their next road trip — to join in the celebration of Harley-Davidson’s 100th anniversary in August in Milwaukee — a major fund-raiser for MDA.

"We’re still trying to figure out how to get both the stroller and our luggage on the bike [the Softail], without doing unintentional wheelies, so we can carry enough to at least hook up with the group in Sturgis (S.D.)," Hinckley says.

Meanwhile, a bottle of Château Mouton Rothschild waits patiently for January 2004 …

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REMEMBERING LOU GEHRIG

June 19 Is Yankee Great’s 100th Birthday

On June 2, 1925, New York Yankees Manager Miller Huggins gave first baseman Wally Pipp the day off to nurse a headache, writing 22-year-old Lou Gehrig into the lineup in his place. It would be almost 14 years before anyone else would start a game at first base for the Yankees.

"I took the two most expensive aspirin in history," Pipp would later say.

Throughout his incredible streak of 2,130 consecutive games, Gehrig played at a consistent degree of excellence. Between 1926 and 1938, Gehrig became the only player in the history of baseball to score at least 100 runs and drive in 100 runs every year. He was named the American League’s most valuable player three times, and was inducted into the Baseball Hall of Fame in 1939 — the year he retired because of the effects of a mysterious muscle-weakening disease.

Gehrig was also the first player to have his uniform number retired by his team.

But Gehrig was much more than a fearsome slugger. He was widely known as one of the game’s great gentlemen. "Lou was the kind of boy that if you had a son, he’s the kind of person you’d like your son to be," said teammate Sam Jones.

He also understood that ball-players had a special responsibility to the people who paid to see them play, especially the children.

Former MDA National Campaign Chairperson Eleanor Gehrig summed up her late husband, who died in 1941, with these words: "I would not have traded two minutes of the joy and the grief with that man for two decades of anything with another."

Happy birthday, Lou. We still miss you.

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ALS Research Roundup

by Dan Stimson

Abnormal Chromosomes Might Be ALS Risk Factors

Researchers have found abnormalities in the chromosomes — the strands of DNA in which genes reside — in several people with sporadic amyotrophic lateral sclerosis.

About 10 percent of ALS cases are hereditary, but the other 90 percent are sporadic, having no clear cause. The new findings, reported in the April 22 issue of Neurology, suggest there might be a genetic component in at least some sporadic cases.

Researchers led by Thomas Meyer of Charité University Hospital in Berlin used blood samples to examine the chromosomes of 85 German patients with sporadic ALS. Five of the patients (6 percent) had chromosomal rearrangements — either a reshuffling of DNA between two chromosomes, or a flipped-over piece of DNA within a single chromosome. These types of abnormalities are believed to occur in less than one-tenth of 1 percent of the general population.

The chromosome or pair of chromosomes affected was different for each patient.

Healthy family members of four patients had the same abnormalities, indicating that the abnormalities were inherited and not secondary to the disease. A few had advanced past their relatives’ age of ALS onset, suggesting they might never develop the disease.

Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, said the study "is very important because it suggests that chromosomal disruption may underlie some cases of sporadic ALS." The presence of chromosomal abnormalities in people without the disease fits a long-held theory that sporadic ALS might arise from genetic susceptibility combined with an environmental "hit," such as exposure to a toxin, he said.

"The next step is to confirm these [findings] in an independent study of as many or more patients," he said. Since 1997, his lab has been collecting blood samples and detailed histories from ALS patients in an attempt to identify genetic and environmental triggers of ALS.

If chromosomal aberrations prove to be a common feature in sporadic ALS, they could be used to pinpoint specific genes that affect ALS risk. In the past, similar aberrations — easier to detect than small changes in DNA — have been used to identify genes involved in other diseases. Already, the German researchers have found that the jumbled pieces of chromosomes from their patients contain many genes with important functions in nerve cells.

‘Supply Line’ Defects Linked to ALS-Like Disease in Mice

A new study adds weight to the idea that a faulty supply line within neurons might trigger some cases of ALS.

In the May 2 issue of Science, researchers from the United Kingdom, Germany and Japan showed that two strains of mice — both of which develop a late-onset paralysis similar to ALS — have genetic flaws in a protein called dynein. Another recent study showed that mutations in a functionally related protein, called dynactin, are at the root of an ALS-like disease in humans (see "Defects in Cell 'Supply Line'," April 2003).

Both proteins are involved in transporting nutrients and other cargo along axons, the threadlike appendages that connect neurons to each other and to muscles.

Mice completely lacking cytoplasmic dynein heavy chain 1 (Dnchc1) — a part of the dynein protein — die during embryonic development. The new study showed that mice with a single defective copy of the Dnchc1 gene appear normal at birth, but lose motor neurons as they age — a process similar to what happens in ALS.

Neurons from the mice proved to have a defect in retrograde transport — the movement of cargo from the axon ending to the neuron’s main compartment. The neurons also had many of the hallmarks seen in postmortem tissue from ALS patients, such as inclusions (accumulations of debris) containing the SOD1 protein. In humans, about 25 percent of familial ALS cases are linked to SOD1 mutations.

Researchers believe that mutations in dynein and dynactin, and perhaps in SOD1, might interrupt the flow of essential growth factors from muscles to motor neurons.

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MDA LEADER, ALS ADVOCATE BEIER DIES

by Tara Wood

	Michael Beier at Wings Over Wall Street, October 2002

Michael Patrick Beier, a New York businessman turned ALS advocate, died April 25 from complications of ALS. He was 39.

Beier, who was director of equity trading for Credit Suisse First Boston, received a diagnosis of ALS in December 2000. Soon after, Beier began to harness the frustration of coping with the disease into raising awareness of ALS and money for ALS research.

Beier’s energy and leadership made indelible marks on MDA’s ALS Division, especially in New York where he helped organize fund-raising galas that saw unprecedented success.

In 2001 he became involved in the MDA Wings of Hope, and rallied the support of his friends and colleagues to raise $700,000. In 2002, the event changed its name to Wings Over Wall Street and, with Beier as chairman, it raised more than $2 million for ALS research. (See "Wings Over Wall Street WOWS New York," November 2002.)

Throughout his ALS advocacy, which included work with grassroots organizations, Beier’s urgent message was also one of aggravation about the challenge of finding a way to arrest or cure ALS.

"ALS is a disease that has made me angry — angry at the ways it affects me, the thousands of others diagnosed, and all of our loved ones," he wrote in the program for the October 2001 event.

Beier’s efforts earned him MDA’s 2002 Personal Achievement Award for the New York Metro area, and he was an MDA national vice president. He was a member of the board of the ALS Committee at Columbia University, and served on the Board of Governors at the ALS Research Center at Johns Hopkins University.

In January 2002, an ALS research fund at Columbia was named in honor of his efforts: the Michael Beier/MDA Wings Over Wall Street ALS Research Fund.

A native New Yorker who grew up in the town of Massapequa on Long Island, he’s survived by his wife, Theresa, daughter Carly, 6, and son Dustin, 4.

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ALS Online

Last month MDA held two expert-led online conferences focused on issues of direct interest to those with ALS — ALS and Respiratory Issues and Adult Neuromuscular Diseases.

This month’s clinical-research conference, Quality of Life With Neuromuscular Disease, will be led by Greg Carter, director of the MDA clinic at Providence/St. Peter Hospital in Olympia, Wash., and co-director of the MDA/ALS Center at the University of Washington in Seattle.

The conference will be held June 11, beginning at 5:30 p.m. Eastern time. Go to www.mda.org/chat/cli-res-host.html for details.

Be sure to watch www.als-mda.org for coverage of MDA’s major conference on ALS clinical trials June 13-15.

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