Drugs, Stem Cells, Trial Designs, National Consortium Occupy ALS Experts at June Meeting

by Margaret Wahl

Stan Appel, Houston
Hiroshi Mitsumoto, New York
Robert Brown, Boston
MDA/ALS Center directors and their colleagues were among the conferees at the June ALS meeting.

Some 100 physicians and scientists gathered last month for a three-day conference in Tarrytown, N.Y., to honor the centennial anniversary of Lou Gehrig’s birth and to pursue new strategies for ALS clinical trials. The meeting took place June 13-15 and was co-sponsored by MDA, the National Institutes of Health (NIH), and Columbia University, as well as several pharmaceutical companies.

The topics emphasized included the following:

Identifying new targets for drug development. Speakers and conferees noted that mice with ALS have been disappointing as predictors of human responses to experimental drugs and explored new ways to determine which compounds to test.

Serge Przedborski, a scientist with the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York, presented an approach that centered on ways to block the process of "programmed cell death," also called "apoptosis," in ALS.

Jill Heemskerk, program director of Technology Development at the National Institute of Neurological Disorders and Stroke at NIH, presented her group’s drug screening effort to identify compounds that may slow neurodegeneration. She said they now have 300 candidates for further testing.

Jeffrey Rosenfeld, director of the MDA/ALS Center in Charlotte, N.C., advocated combining existing agents for which there is any ALS-related rationale into drug "cocktails" and testing them in patients. His center is already conducting such a trial.

Some conferees expressed concern about losing important data about individual drugs and disease mechanisms with this approach.

Using stem cells to restore nervous system functions. Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, summarized current developments in stem cell research.

He noted that even if stem cells can only become supportive tissue near nerve cells, that might be enough to save at least some dying cells. He called this a biological "good neighbor" phenomenon.

Taking nutrition and ventilation seriously. It was noted that the survival benefits offered by gastrostomy tubes (feeding tubes) to compensate for swallowing difficulties, and by noninvasive ventilation to assist breathing, are significant.

Improving both measurements taken during trials and end points of trials. Much discussion time was given to decisions about which measurements best reflect changes that occur in ALS over time, as well as which outcome measures, or end points, are the best indicators of results in a clinical trial.

The speakers noted that using survival as an end point in determining the effectiveness of a treatment may not be as useful as it once was.

	Serge Przedborski, MDA/ALS Center, New York

Assisted ventilation and the use of gastrostomy tubes for nutrition can prolong life, they said, making a trial participant’s decision about these matters a factor that may obscure the true effect of the experimental medication.

Measurements taken during a trial are also important, it was noted. Current measurements include scales that rate strength or function, such as the Appel ALS Scale and the ALS Functional Rating Scale; measurements of muscle activity, such as maximum voluntary isometric contraction tests and manual muscle testing; and questionnaires about quality of life.

Biological markers that can be easily obtained and that correlate with disease progression, such as those that are used in cancer and AIDS, would be ideal, the researchers noted, but these have not yet been identified with any certainty in ALS. Doing so is a priority, the conferees agreed.

Robert Miller, MDA/ALS Center, San Francisco

For now, measuring the number of motor units (a nerve cell and the fibers that connect it to a muscle cell are a motor unit) by electrophysiology, and measuring the integrity of nerve cells in the brain using magnetic resonance spectroscopy, are useful ALS biological markers, presenters said.

M. Flint Beal of the Weill Medical College of Cornell University noted that there are 20 recently identified blood compounds that may prove useful as ALS markers.

Choosing the best statistical methods and trial designs. The design and execution of clinical trials is complex, and several statistics experts shed light on the promises and pitfalls of various approaches.

Among the subjects presented were the pros and cons of using placebo ("dummy" medication) groups as control groups, compared to using existing data from untreated patients ("historical controls"), or having each trial participant go through a treatment and nontreatment phase of the trial.

Among the pitfalls cited were having too few patients in a trial, making the results inconclusive; having the control (untreated) and experimental (treated) groups unbalanced for other factors, such as gastrostomy tubes; not using measurements that accurately reflect the effects of a medication; and not accounting properly for missing data, such as that from study dropouts.

Assuring safety. Speakers discussed various types of safety monitoring boards, which look for excess numbers of adverse, or harmful, events in a trial and can suggest premature trial cessation.

Considering a North American or U.S. ALS consortium. There are now three U.S. regional ALS groups and one Canadian ALS group that share data among their members and combine member institutions in each region to conduct clinical trials.

The conferees were asked to consider the matter of forming one large U.S. or North American group. Some attendees voiced qualms about doing so, but the conferees voted to take a first step — the creation of a steering committee nominating group — toward a U.S. or North American consortium.

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'Share the Care' Circles: Keeping the Circle Unbroken

by Christina Medvescek

This is the final installment in a series on Share the Care — organized, long-term, in-home volunteer caregiving support for people with diseases like ALS. The first two articles looked at the basics of starting a circle and some of the jobs performed by volunteers. The concept comes from Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock (Fireside, 1995). Additional information can be found at the Care Team Network, www.careteam.org or (866) 435-1391.

Share the Care circles can go through a kind of "fireworks effect" — they flare brightly for a while, then slowly fade. For a circle to burn steadily over the long haul, it has to be flexible and responsive to the family’s changing needs.

Change Focus

Patsy Séguin-Tremblay’s sons Alexandre (left) and Patrick receive special attention from her "circle of angels."

When her circle was first organized, Patricia (Patsy) Séguin-Tremblay, 40, of Ontario, Canada, was still able — with help — to use the bathroom by herself. But as her abilities waned she required full assistance with her personal care.

"When Patsy started to have difficulty being understood, some volunteers got nervous and were ill at ease, so we lost some people," says Jacinthe Laforge, the Ontario social worker who organized the circle for Séguin-Tremblay in 1999. "And Patsy didn’t want just anyone to perform very personal tasks. As Patsy’s needs have increased, it’s become more difficult to fill in the gaps with volunteers."

Instead, close family members and Canadian social service workers now provide Séguin-Tremblay’s personal care, and her "circle of angels" cares for her family. Volunteers plan regular activities for her two children, like the "Pizza Aunt" who supervises homemade pizza making.

"This gives my husband/primary caregiver a break and I have the reassurance that my children are having most of their needs met that we can’t at times," she says.

The Laurettes, a care circle for Laurie Russell, 57, of Glyndon, Md., also has changed as her ALS has progressed over the past three years.

"We provide social support rather than caregiving, which she gets from paid caregivers," said Pam Corckran of Baltimore, one of the group’s organizers. Although some volunteers still bring meals and perform small chores, most are scheduled to "keep her connected to the world" by taking her out, bringing flowers, or sending cards and jokes.

"You have to be flexible and understand that this is a person whose needs do change, and who has good and bad days," Corckran says. "Don’t be hurt if they say they don’t want to be with you. It’s not you, they’re just tired."

Communication Is Key

Most established groups consist of an inner core of "regulars" and an outer ring of "free floaters" who fill in as needed. As circles revolve into new orbits, people on the outskirts can sometimes fall off.

Suzie Cowan of Memphis, Tenn., has kept a highly organized group of caregiving volunteers operating smoothly almost 400 miles away in Rex, Ga., for her friend David Jayne, who has lived with ALS for 15 years. About every two weeks, Cowan sends an e-mail update to 80 people, of whom about 30 are active volunteers. The messages recognize those who have recently shopped, cleaned, mowed, driven, cooked or visited, and provide tidbits about Jayne’s health and activities.

The updates are critical, Cowan says. "They keep people reminded about David, and show he is still a vital person who has a lot to do and is living life."

	Julie Reiman, whose husband Mark lived with ALS for 12 years, is flanked by her good friends and Share the Care organizers Aileen Spradlin (left) and Cindy Wilson.

Besides communicating with volunteers, care circle organizers need to keep in regular contact (at least once a week) with the family being served, advises Cindy Wilson of Everett, Wash. Two years ago, Wilson and Aileen Spradlin organized a Share the Care circle for their friend Mark Reiman, who died in April after living with ALS for 12 years.

"Julie (Reiman) and I were in touch daily so it made it easy to find out their needs," Wilson said. "There were times during Mark’s illness that they needed our Share the Care group to pull back and give them a breather. They needed to have family time without a caregiver dropping in. So I would just call the person scheduled to help and let them know of the change."

Thank You Goes a Long Way

Share the Care volunteers get a lot out of providing meaningful help. But an expression of gratitude is always appreciated, says Tamara Moore, 36, of Paradise, Calif.

Moore has a metabolic muscle disorder, carnitine palmityl transferase deficiency type 2, that causes near-constant pain and weakness, with occasional "muscular crises" when she can’t be moved. A single mother of two school-aged children, Moore had to quickly put together her own care team of government help and private volunteers after her divorce.

She’s found that gratitude — through words, gestures, cards and notes — is essential not only for keeping people connected to her care circle, but also to her self-worth.

"It’s important for my dignity that I give back, even if only an encouraging smile or kind words or positiveness," she says. "I respect and fully appreciate everybody and everything who is there for me, even after years of time gone by. This is what helps keep the support circle fully alive."

Cindy Wilson knows exactly what Moore is talking about.

"I have a picture in my mind that sums up the whole experience. Mark was sitting in his wheelchair during the last weeks of his life, when he was unable to use his arms and hands and his words were very limited. After feeding him [via feeding tube], I looked up and saw these two bright eyes looking at me, filled with such appreciation, and he said, in his quiet voice, ‘Thank you, Cin.’

"I hold that in my heart forever."

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'Share the Care' Extends Life for Recipient

Laurie Russell, recipient of MDA’s 2003 Maryland Personal Achievement Award, has had ALS for three years. Here are her comments on the value of her volunteer circle.

Keeping Laurie Russell (center) "connected to the world" is the mission of Share the Care team members Pam Corckran (left) and Carol Weiskittel.
Share the Care has enhanced her will to live, says Russell.

"I am very blessed to be able to have wonderful [paid] caregivers taking care of me. But many patients don’t have that luxury. Family members burn out quickly and this disease disrupts families in a terrible way.

"I am also blessed to have a large group of friends who volunteer to help with so many things.… They provide things that a full-time caregiver would not have the time or energy to do. I really believe these people have extended my life because at the present time, I don’t feel I’m too much of a burden to my family.

"I wish for every patient to have a volunteer support group to assist their primary caregivers. I think these volunteers can be gleaned from church, workplace or community. It’s very hard for people to ask for help, so hopefully some person in the patient’s circle of family and friends will be a leader in organizing this effort. I feel many ALS patients give up because they don’t want to be a burden to their families.

"I could never thank the Laurettes adequately for what they have done for me and my family.… I will be forever indebted to these ‘angels’ in my life."

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ALS Online

In August, two MDA clinical-research online conferences will focus on issues of interest to those with ALS. These conferences begin at 5:30 p.m. Eastern time.

Aug. 6 – Amyotrophic Lateral Sclerosis will be led by Walter G. Bradley, director of the Kessenich Family MDA/ALS Center at the University of Miami.

Aug. 20 – Exercise for Adults With Neuromuscular Diseases will be led by John Kissel, co-director of the new MDA/ALS Center at Ohio State University, and Wendy King, a physical therapist at the OSU center.

To participate, go to www.mda.org/chat/cli-res-host.html.

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'Type A' Counselor Rechannels Energy

by Tara Wood

An old saying goes, "physician, heal thyself."

In the case of Loris Buccola, a 62-year-old from Silverton, Ore., the saying could instead be, "Counselor, counsel thyself."

Buccola enjoys spending time with his granddaughter, Eden, who is 3.

When Buccola received an ALS diagnosis in November 1999, he began to do just that, with the help of a wide support network of friends, colleagues and health care professionals.

Formerly an avid long-distance cyclist and runner, Buccola now focuses on management of his symptoms and adapting his life to the changes ALS brings.

The result so far is an outgoing man with an attitude that inspires and energizes others facing the same challenges.

A Teacher and Counselor

Buccola continues to work full time in two jobs, one of which is teaching two undergraduate psychology courses at Mount Angel Abbey and Seminary in nearby St. Benedict, Ore.

The college of theology, which boasts about 150 students from all over the world, has been very accommodating to his changing needs, said Buccola, who uses a power wheelchair and "can’t use his hands for much more than [computer] mouse clicking.

"Students get my notes out of my little briefcase and turn pages for me," Buccola said. "I’ve still got plenty of voice, and don’t yet need respiratory help, so I’m relatively independent."

In addition, he does 15 hours a week of private counseling at his home, and about 20 hours a week of phone work and supervision for an employee assistance program.

Counseling Himself

Buccola has tapped into his counseling skills to help himself avoid lengthy bouts of depression while living with ALS.

"Really, what I had to do is exercise what I knew on myself instead of on somebody else," he said. His training, and a slow disease progression, have helped to make it possible for him to adapt both physically and mentally.

His professional skills have blended well with a faith-centered philosophy about life that sees us all on the same journey.

"My relationship with God is fundamental, but I don’t like the idea that you postpone all your payoff until you die. We start making our heaven or our hell right here," Buccola said. "I don’t pray for cures, I pray for healing and purity of heart, and if a cure comes, that’ll be wonderful."

Although his weekly schedule keeps him busy, Buccola said that learning what his limitations are with ALS, just as he did as an endurance athlete, has been crucial to managing his disease.

For example, he quit driving and riding a bike when it appeared it was time to do so.

"That was quite a shift for me because I was a real ‘type A’ personality. I’m channeling type A in different directions," he said, such as becoming computer savvy and staying up on ALS information.

Sprinkled throughout his activities is the delightful, dry sense of humor that Buccola is known for.

In fact, he jokes with his wife, Jane, about the benefits of ALS: He has long fingernails for the first time (he can’t bite them), and he gets lots of extra affection (people hug him or kiss him on the head).

But seriously, Buccola says, the humor "is just me. I was that way before I got this. But it really is a very effective way to deal with some of the anxiety and other feelings you get about this."

Teaming Up for Care

Another major key to his smooth situation is a care team of some 50 volunteers who help Buccola with his daily needs, and have been a boon to him and his wife.

"I didn’t want to lose a wife to gain a caregiver," he said.

Five men, including his two brothers, take turns helping get him up and dressed in the mornings. In addition, someone comes to the house for three or four hours every day "just to hang out here so Jane can get out and do what she needs to do."

The care team also allows Jane to get away for a few days every six weeks or so to relax or visit family. The couple has three adult children, Ginni, Norm and Johanna.

The care team enables Buccola to relish another luxury that he never had before ALS: time.

"I have time to think now in a way that I have not before, and just meditate in a way that I’ve never had in my life," he said.

He can also use that time to play with his granddaughter, Eden, who is 3 and loves to push the lift buttons on his wheelchair.

Counseling for the Family

When he shares his wisdom with others who have ALS, Buccola recognizes the diverse challenges that the disease brings.

Recently he gave a talk on "Surviving and Thriving With ALS" at a local MDA symposium.

"The first thing I say is, I understand entirely. You can’t be anything other than what you are right now, and who you are. If you are struggling with it, of course you are," he said. "Allow yourself the time to go through what you have to go through to get to a point of acceptance."

Buccola also calls ALS a family disease.

"It strikes everybody, and not everybody in a family comes along in the acceptance process at the same time. It requires a lot of patience and forbearance," he said.

Buccola said that a clergy member, social worker or counselor sometimes can help a family deal with ALS.

An MDA support group also can be very important, he said, even though it may be hard to see others whose disease has progressed.

"It’s very difficult to go to the first support group and see people on vents and stuff. But give yourself three meetings before you decide not to do it again because there’s so much mutual support and information. That’s one of the ways I’ve survived," Buccola said.

Buccola also urges people with ALS to not worry if they see others coping better than they are.

"Every case of ALS is unique, every life is unique, so just because you hear about somebody dealing with it so well and you can’t, don’t judge yourself because you’re dealing with a unique set of circumstances."

None of this is to say that ALS doesn’t get to him; Buccola readily admits that he has his down times.

"When I’m down, I’m down. Fortunately for me it just isn’t for very long.

"There’s a time for mourning and grief about it, there’s other time to live and celebrate the life that you have. Let that come, too, when it comes along."

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A NEW LIFE WITH ALS

An ALS Patient's Perspective

by Steven Bishop

I used to shy away from situations that dealt with difficult human emotions. Funerals were not attended and words of encouragement were left unsaid for fear of saying the wrong thing.

After being diagnosed with ALS, I realized that it didn’t matter what people said. The fact that anything was said at all meant that someone cared. It was a lesson never to be forgotten.

Some of our friends were apprehensive about asking questions about ALS and my condition so we decided to disarm that immediately. When Jennifer and I informed people of my health, we’d immediately add, "There are no stupid questions you could ask or comments you could make that would bother us. Thank you for caring." The gift of open dialog was given to both parties without any awkward moments.

Gallows or dark humor has become a weapon we use quite often against ALS. With the open relationships we’ve developed around ALS, we’re able to use this weapon without offending or shocking … in most cases.

Getting Started …

My slow progression is an incredible blessing but a bit of a tease. I still find myself with enough strength or energy to start many things. My body allows me to begin, whether it’s cleaning out the garage, wrestling with Christopher or running errands with Jennifer.

Then comes the point of complete exhaustion and fatigue. It is almost like hitting a brick wall, and I feel I can’t take another step or lift a feather. This is extremely frustrating for someone who prides himself on completing the job.

I know that many of my comrades with ALS can relate and some are unable to even start projects or have playtime with children, grandchildren or pets.

My personal challenge will be to keep my positive attitude when my physical capabilities deteriorate even further. I’m confident this will be accomplished through my personal determination and network of support. No matter what stage of this illness I am in, reaching out to others will remain extremely valuable. I know I have much to learn about life and coping with the march of ALS’s attack, but my mental attitude is my biggest ally.

ALS as a Gift

The following paragraph is how I summed up my perspective to an audience of about 300 people at an MDA ALS gala Jennifer and I hosted in Denver recently, where we helped raise approximately $54,000 for MDA’s ALS research program:

"I am not guaranteed tomorrow. No one is. Once I was aware of that fact, my outlook on life focused to the present. I am busy trying to create memories of today that can be enjoyed as part of the past but not lamented. Tomorrow is still to be planned for but not obsessed over.

"ALS has been a gift of perspective to me. Some of us who have experienced ALS may not feel that we’ve been given a gift and rightfully so. It may be difficult to think of a gift as having your body’s complex biological wiring slowly disconnected until you can no longer move. Meanwhile, the mental capacities remain as vibrant as ever, if not more so.

"I have no blame for this disease. It is what it is and what I make of it. My legacy will be how I handled an insidious attack on my being and then used it to launch a mental assault on the disease. That legacy may begin tomorrow, but does anyone really know?"

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.

Join the Bishops every other Wednesday for the PALS With Children chat at www.mda.org.

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ALS Research Roundup

Exercise Beneficial to Mice with ALS

MDA grantees Carlos Moraes and Walter Bradley at the University of Miami School of Medicine have found the first concrete evidence that exercise might actually slow the course of ALS.

They exercised mice with a genetic form of the disease, caused by mutations in the SOD1 gene, by putting them on a treadmill for 30 minutes a day from before the onset of ALS until the mice were too weak to run. Compared to nonexercised mice, those on the regimen showed an increase in life span, with males showing a more significant increase than females.

The results, which appeared in the June issue of Annals of Neurology, "argue against exercise being a risk factor, at least for SOD1-associated [ALS]," said Moraes, a member of MDA’s Scientific Advisory Committee. Bradley directs the Kessenich Family MDA/ALS Center at the university.

Two Studies Seek Blood Samples

Two research groups are collecting blood samples from people with ALS in an effort to track down genes that might influence susceptibility to the disease.

Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, and Teepu Siddique, director of the MDA clinic at Northwestern Memorial Hospital in Chicago, are collecting samples from sporadic (nongenetic) ALS patients and their families. For more information, call (312) 503-2712 (Chicago) or (617) 726-5750 (Boston).

Jonathan Glass, director of the MDA/ALS Center at Emory University School of Medicine in Atlanta, recently began a similar project in collaboration with deCode, a genomics firm in Iceland. Glass is seeking blood samples from 500 "triads" (an ALS patient plus two living biological parents). For more information, call toll-free (888) 413-9315.

Donating blood doesn’t require travel to the study sites.

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Florida Writer Fights Shadow of ALS

by Bill Greenberg

Marjorie Spoto

Like most people, Marjorie Spoto, 37, of Key West, Fla., doesn’t have ALS, nor do any of her siblings or children.

Not yet, anyway, or at least not as far as they know.

But unlike most people, Spoto has two cases of ALS in her family tree. Her maternal grandfather passed away in 1973, and her mother died of complications from ALS in 1993.

’
When It Rains’

Spoto, who works in sales and marketing for Key West Online, began to write about her family’s experience and her own feelings about ALS.

"It’s on my mind a lot," she explains. "Whenever I fall, or bump my knee or something, it’s like, ‘Uh-oh, is that the start of ALS?’ So the logical thing for me to do was to write about our story."

The result is Spoto’s first novel, When It Rains, a romantic drama that tells the story of how three sisters cope with the death of their mother from ALS and their fears that they, too, will develop the disease. The book was self-published in 1996. For more information, see www.whenitrains.com.

Spoto has donated a portion of the book sales to support the Kessenich Family MDA/ALS Center at the University of Miami and helped with other MDA fund-raising activities.

And there’s more to come.

Page to Screen

Spoto has written a screenplay of her novel and hopes to see it made into a motion picture.

"I wanted to direct it myself, but was told [by potential investors] that I needed a director with film experience," she explains. "When a friend of a friend happened to tell me that he went to film school with Charlie Matthau, I called him right away."

Charles Matthau, whose directing credits include "Mrs. Lambert Remembers Love," "The Marriage Fool" and "The Grass Harp" — the latter two films starring his father, the late Walter Matthau — read the screenplay and agreed to meet with Spoto to discuss the project.

"I told him I was going to be in L.A. anyway," she laughs. "But the truth is that I made a special trip just to see him. That’s how he became one of the first people to sign on with me."

Spoto is currently working to line up investors (she needs to raise $600,000 to begin production), and hopes pre-production of the film can begin soon. It hasn’t been easy: At one point she was close to her goal, only to see the Sept. 11 terrorist attacks cause key investors to back out.

"I’ve been working on this project for seven years now," Spoto says defiantly. "I’m not giving up — I’m a fighter."

To Test or Not to Test

When doctors learned that Spoto’s mother wasn’t the first in her family to be affected by ALS, they recommended that Spoto and her four siblings seek genetic testing for the disease.

But for Spoto and her family, the real question was what to make of the test results.

"We just wondered what difference the test would really make," Spoto explains. "We talked about it and decided there are no guarantees. And really, who does get a guarantee in this world, anyway?"

So they’ve decided against testing for now.

Meanwhile, this mother of two continues to write and to line up investors for the film. And while she continues her personal fight against ALS, she refuses to let its shadow slow her down.

"That’s the moral of my book," Spoto asserts. "You have to learn to live life every day, as if it were your last."

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Genetics and ALS

It’s believed that some 10 percent of the cases of adult-onset ALS are "familial," or inherited. Of that number, some 20 percent are thought to be caused by defects or mutations in the SOD1 gene — meaning that these cases account for 2 percent of the total ALS population.

Because scientists have yet to find the precise cause of nonfamilial or "sporadic" ALS, doctors concede that multiple cases in a single family could be the result of coincidence or of some other still unidentified factor.

Athena Diagnostics (www.athenadiagnostics.com), in partnership with Boston’s Massachusetts General Hospital, can test for some of the possible SOD1 mutations from a small blood sample. The company promises a three-month turnaround and charges $595 for the test.

A positive test for SOD1 mutations indicates a very strong likelihood that the person will develop ALS but it can’t indicate when symptoms will arise. Some people choose to be tested so they can make plans if the test is positive.

A negative result from the SOD1 test offers no guarantee that the person won’t develop ALS as a result of a different SOD1 mutation or some other factor.

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Columnist, MDA Leader Baber Dies

Asa Baber

Asa Baber, 66, long-time columnist for Playboy magazine and an MDA national vice president, died June 16 in Chicago. Baber, who shared the same birthday — June 19 — as his idol Lou Gehrig, learned he had ALS in September 2001.

Known for his wry humor and "tell it like it is" style, Baber wrote the "Men" column for Playboy for two decades, in addition to numerous works of fiction, journalism and drama.

As a guest on last year’s Jerry Lewis MDA Telethon, Baber read excerpts from "Lou Gehrig and Me," the column in which he announced he had ALS. "And that is that," he wrote. "I am ready for whatever comes my way." Baber’s farewell "Men" column appeared in last month’s issue of Playboy.

As an MDA national vice president, Baber was a "friend and courageous ally," said Robert Ross, MDA President and CEO.

A Chicago native, Baber is survived by sons Brendan and Jim, fiancée Sherri Stubbs, and sister Dorothy.

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MDA Opens New ALS Center in Columbus

MDA’s ALS Division announced the opening of the newest MDA/ALS center at Ohio State University Medical Center in Columbus. The newly designated facility brings the total number of such centers nationwide to 30.

Under the direction of OSU College of Medicine and Public Health neurologists John Kissel and Steven Nash, the new center is located in McCampbell Hall at the medical center.

MDA/ALS centers provide ALS patients with care from physicians, a nurse coordinator, respiratory therapist, physical therapist, genetics counselor and other professionals.

In addition to clinical services, the Columbus team will conduct ongoing ALS research.

Those wishing to obtain more information or to schedule an appointment at the center should call MDA’s office in Columbus at (614) 841-1014.

For a complete list of MDA/ALS centers, go to www.als-mda.org/clinics/alsserv.html.

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