It Takes a Village to Fight the System

A forklift hoists David Jayne into a private jet for a lobbying trip to Washington, D.C.

by Christina Medvescek

When David Jayne took up his sword against Medicare two years ago, it wasn't a solitary fight. The support and backing of the members of his Circle of Friends care team, and the organization he founded, National Coalition to Amend the Homebound Restriction (NCAHB), made his crusade possible.

Since May 2001, Jayne, 41, has made three week-long trips from his Atlanta home to Washington to lobby for legislation lifting restrictions that keep people who receive Medicare home nursing services from leaving their homes (see "Medicare Homebound Restriction"). Each trip involved a mountain of detailed planning and scheduling by Jayne, family and friends, his live-in caregiver and his volunteer care team organized by Suzie Cowan of Germantown, Tenn.

Planning and Moving

"To even board the plane for the trip, David has to be loaded and unloaded into a jet through the rear door via a forklift," Cowan explains. Jayne, who has had ALS for 14 years, can move two fingers, needs a ventilator for breathing and speaks through a voice synthesizer. He travels by donated private jet because his equipment makes commercial air travel impossible.

Fund raising is another hurdle, with each trip costing about $6,000. For the first two trips, Cowan got hotels to donate rooms, an Atlanta aviation company donated the flights and Jayne's supporters rented an accessible van. The third trip, during the week of July 22, was a rush event due to impending Senate action, and was funded by "lobbyist organizations, advocacy groups, patient groups and personal donations," Jayne says.

Once in D.C., Jayne relied on two traveling caregivers to get him through his marathon days. "For David to get to a 9 a.m. meeting on The Hill with a senator, we would wake up at 4 a.m. and begin the daily process of getting him out of bed, bathed, dressed and ready for the day," says Cowan, who made two trips with Jayne. A glitch in the morning routine has meant a missed meeting.

Personal Appearances

Jayne spent his days in Washington traveling between government offices, interviews with the press and meetings with people who could introduce him to other people. For the most part, he was well received. His physical presence alone carried a big message about the difficulties — and abilities — of people with ALS.

Once, while giving a speech to a roomful of legislators, his finger "stopped working" and couldn't operate the voice synthesizer. There was a long silence, Cowan recalls. "David was so cool, calm and collected and finally his finger just started working again. The awesome thing was that no one said a word. Everyone just waited for David to resume his speech."

Jayne, who retired from Domino's Pizza as a financial consultant, calls himself "just a good ole boy made angry by an outdated government policy.

"I'm not certain if it is a blessing or a curse that I am extremely hardheaded," he adds. "But success was the only end imagined.

"The first elected official I ever met with was my congressman in his district office. After 20 minutes of discussion he said, 'I can tell you're not going to take no for an answer.' Then he phoned Washington and cosponsored the legislation."

Broken Promises

Other political encounters have been less luminous.

Jayne recalls, "The most demoralizing time was when I listened to an all-night committee session during Medicare markup, when Congressman (Ed) Markey (D-Mass.) offered the 'David Jayne Amendment.' Chairman (Billy) Tauzin (R-La.) promised Mr. Markey that if he would withdraw the amendment, the committee would work with Congressman Markey to include homebound language in the bill. This was an empty promise."

The committee never worked with Markey and drafted inadequate language that was later passed by the U.S. House of Representatives (see "U.S. House Waters Down Amendment," August 2002). Jayne adds, "As a lifelong Republican, my party really let me down."

Circle of Support

David Jayne and Suzie Cowan

On the plus side have been the people who rallied around to make the effort possible. Jayne has more than 80 people in his Circle of Friends, which was organized through his church two years ago after his wife divorced him. (Cowan structured the team based on the book Share the Care by Cappy Capossela and Sheila Warnock.)

When Jayne's fingers began to fail this spring, the Circle raised funds for an Eyegaze communication system because, Cowan says, "We never want David to be without communication!"

Jayne also credits the co-founders of NCAHB, lobbyists, legislators and former Senator Robert Dole, whom he happened to meet while waiting for a plane and who signed on as honorary chairman of NCAHB.

"They've all given 110 percent," Jayne says. "Though not successful yet, I've learned the tremendous power of a grassroots effort."

Keeping Hope Alive

Still on Jayne's agenda is legislative success for homebound reform.

And then, "Medicare must recognize and address the population of long-term home health beneficiaries," he charges. "Through advancements in technology and medicine, this long-term population, which includes people with ALS, is growing. We must fight to preserve current services and work for more."

Although he concedes that during the two years he has spent on this effort his health has declined considerably, he adds, "I would much rather attempt to make a difference than lie in bed waiting to die."

To others with ALS who yearn to take up their swords and fight for their own causes, he says, "Remember, anything is possible. Do not be afraid to ask for help. Keep hope alive. Tomorrow will be a better day."

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Medicare Homebound Restriction: Agency Clarifies Language

"Common sense" prevailed at the Centers for Medicare and Medicaid Services (CMS) this summer, with the result that home health care recipients no longer have to fear occasionally leaving their homes.

CMS Administrator Tom Scully clarified policy language that requires chronically ill people to stay at home in order to receive Medicare home health services. The new language doesn't change Medicare policy, but states more clearly that home health services may not be terminated simply because a beneficiary leaves home occasionally for nonmedical or nonreligious reasons.

The language was added after activist David Jayne of Atlanta met with Scully in early July (see "It Takes a Village,"). "Mr. Jayne pointed out several common sense changes" that could be made in current policy language, said Jennie McGihon, a CMS public affairs specialist.

Noting that he'd heard accounts of qualified beneficiaries losing services after attending funerals, class reunions or other events not specifically mentioned in Medicare policy instructions, Scully said, "I am resolved to make sure that the instructions containing our policy are written clearly enough to avoid such misunderstandings."

CMS expanded the list of "infrequent and unique events" that are acceptable absences from the home to include "an occasional trip to the barber, a walk around the block, a drive, attendance at a family reunion, funeral, [or] graduation," and notes that the list still isn't all-inclusive.

"It's a start," Jayne said of Scully's clarifications. "It will provide some relief for the severely disabled. But we need legislation that's more specific and cannot be arbitrarily applied."

In August, Sen. Susan Collins (R-Maine) introduced the David Jayne Medicare Homebound Modernization Act of 2002 (S. 2848), which amends the homebound definition to base eligibility on the patient's functional limitations and clinical condition. The act provides specific, limited exceptions to the homebound rule for individuals: who have been certified by a doctor as having a permanent and severe condition; who need assistance with a significant number of the activities of daily living, and who can't leave the house unassisted; and who have received home health services for 12 months and can only leave home thanks to those services.

Jayne, who founded the National Coalition to Amend the Homebound Restriction, an online coalition of about 13,000 people and 46 organizations, including MDA (www.amendhomeboundpolicy.homestead.com), urges people to contact their senators to support the bill. "We desperately need co-sponsors to succeed," he said.

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ALS Research Roundup

Third Trial Needed to Judge Myotrophin

A re-analysis of the results of two clinical trials of Myotrophin (insulin-like growth factor 1, or IGF1) conducted in the 1990s has done little to change the debate over whether the drug helps in ALS.

The Cochrane Collaboration, a group of expert reviewers (see www.cochrane.org), concluded in a recently released document that "there are significant methodological concerns regarding the [trials] of IGF1 in ALS reported to date." The report says that further trials need to be undertaken and notes that "the results of randomized, placebo-controlled trials as currently available do not permit a definitive assessment of the efficacy of IGF1 in ALS."

A new, multicenter trial of Myotrophin to seek much-needed answers is planned. (See"Myotrophin Back Again," and www.mda.org/research/ct-alsmyotrophin.html.) For trial information, contact Susan Paxton at the Mayo Medical Center in Rochester, Minn., at (507) 284-8729 or paxton.susan@mayo.edu.

A New and Improved Neurotrophic Factor?

Although many so-called neurotrophic factors have been tested and then shelved in clinical trials against ALS, a newcomer to the scene, called hepatocyte growth factor (HGF), might succeed where others failed, a Japanese research group says.

HGF, a protein named for its ability to stimulate liver growth, turns out to have neurotrophic effects, meaning it can promote the growth and survival of nerve cells.

In the Aug. 1 issue of the Journal of Neuroscience, Toshikazu Nakamura and colleagues from Osaka University Graduate School of Medicine show that HGF delays paralysis and death in mice with ALS. The mice, which carry a mutant version of the SOD1 gene that causes familial ALS, died after about nine months without HGF. But mice given an HGF gene that's turned on at high levels in nerve cells lived an average of one month longer.

Other neurotrophic factors have shown similar promise in mice, but then failed in humans with ALS. Nakamura and colleagues speculate that HGF might work better because it seems to act not only on the muscle-controlling nerve cells killed by ALS, but also on astrocytes, a type of support cell in the nervous system. In nerve cells, HGF suppresses a protein that triggers cell death, and in astrocytes, it stabilizes EAAT2, a protein that normally cleans up toxic amounts of the brain chemical glutamate but somehow gets degraded in ALS.

Researchers Seek Families With 'ALS Plus'

Investigators at Harvard Medical School in Boston are seeking families with a history of a neuromuscular disease that may have been diagnosed as ALS combined with two other disorders — Paget disease of bone and frontotemporal dementia. This combination is linked to chromosome 9 and involves cellular abnormalities called inclusion bodies.

Paget disease is associated with pain in the bones and characteristic X-ray findings, and frontotemporal dementia involves language-related deficits, personality changes and other cognitive problems.

The team has identified five large families with this combination and has noted frontotemporal dementia in approximately one-third of the family members. The researchers have found a region on chromosome 9 that they believe holds the gene underlying this complex disorder, but more families are needed to pin down the specific gene involved.

If you have a family history of this combination of problems, the researchers would like to hear from you and will travel to your home.

For more information, call Virginia Kimonis or Giles Watts at (617) 355-4697 or (617) 355-7748, or e-mail virginia.kimonis@tch.harvard.edu.

Bile Acid's Nicer Side

It's taken a bad rap through history, long associated with melancholy and jaundice, but bile acid could turn out to have therapeutic value against ALS and other neurological diseases.

In the July 29 issue of the Proceedings of the National Academy of Sciences, Walter Low and colleagues from the University of Minnesota in Minneapolis show that injections of a type of bile acid, TUDCA, can stave off Huntington's disease in mice.

TUDCA has antioxidant properties and also blocks "cell suicide," or apoptosis, which is thought to be one way that nerve cells die in ALS. It's FDA-approved for the treatment of biliary cirrhosis, a liver disease.

"What's exciting about TUDCA, in addition to its remarkable anti-apoptotic quality, is that it's made by our own bodies [in the liver] and causes virtually no side effects when given as a drug. TUDCA may even have the potential for treating Parkinson's, Alzheimer's and ALS," the researchers said in a press release.

Scientists Find Way to Turn Stem Cells into Motor Neurons

One obvious way to use stem cells for ALS treatment would be to turn them into replacement neurons. Another option might be to save existing neurons by turning stem cells into blood cells or astrocytes in the nervous system.

Some researchers believe that stem cells — the primitive cells that assemble our bodies — have the potential to regenerate the mucle-controlling nerve cells (motor neurons) lost to ALS.

A major obstacle to that approach: Scientists did not have an efficient way to make stem cells become motor neurons. But in the July 17 online edition of Cell, Thomas Jessell and colleagues at the Howard Hughes Medical Institute and Columbia University in New York report that they've done just that using mouse embryonic stem cells in a lab dish. They also show that the neurons, when implanted into mouse embryos, migrate to the right location in the spinal cord and make appropriate connections with muscle fibers.

Skeptics say it would be a far greater — and perhaps impossible feat — for stem cells to replace and correctly "rewire" motor neurons in human adults, and that stem cells are more likely to work by producing growth factors or rebooting the immune system. Still, according to a Hughes Institute press release, Jessell plans to collaborate with other researchers to find out if his cells can restore function in mice with ALS. He also hopes to develop an efficient method of turning human embryonic stem cells into motor neurons.

Stem Cell Research Stymied by Red Tape and Controversy

Political controversy, red tape and commercial interests have impeded stem cell research, scientists and academic leaders told the New York Times last month. But, fortunately, that newspaper reports, a little-publicized "loophole" in last year's ruling on embryonic stem cells makes things a little easier than some had feared they would be. (See "U.S. Rule on Stem Cell Studies Lets Researchers Use New Lines," New York Times, Aug. 7, 2002, or www.nyt.com.)

The August 2001 ruling by President Bush restricted federally funded scientists to using only those embryonic stem cell lines that had already been established and warned them not to develop any new ones. In March, however, the National Institutes of Health interpreted the ruling to mean that scientists could proceed with new stem cell lines in laboratories that receive federal grants as long as the funding for the research on new stem cell lines doesn't come from the government.

Many scientists believe donated stem cells from bone marrow can be developed for therapeutic uses in diseases like ALS. But research on embryonic cells is considered important at least for understanding how cells "choose" a path for development and the roles they'll play in the body.

Better Care Needed at End of Life

In a survey of 100 people with ALS in Oregon and Washington between 1995 and 1997, investigators found that 56 percent would consider assisted suicide, while 44 percent agreed with the statement, "If physician-assisted suicide were legal, I would request a lethal prescription from a physician." Oregon is the only state to have approved physician-assisted suicide, enacting the legislation in 1997. The results are in the July issue of Neurology Today.

Wendy Johnston, associate professor of neurology at the University of Alberta in Edmonton, Canada, was part of the study team. She told Neurology Today that she was "concerned that physicians perceive that assisting death in ALS is necessary and appropriate, rather than addressing their patients' fears of suffering at the end of life."

In the same issue, neurologist Hiroshi Mitsumoto, who directs the MDA/ALS Center at Columbia-Presbyterian Medical Center in New York, echoed these sentiments. "It is important that we learn how to approach our patients, to learn about their spiritual experience, their past, their families, and how they were brought up — to become familiar with the core of each individual," Mitsumoto said.

A survey of 50 caregivers of ALS patients, conducted in 2000 and published in the Aug. 13 issue of Neurology, found mixed reactions to the professional care received. Most of the caregivers reported that the patients' wishes were followed during the last month of life, including their wishes regarding death; but many also reported that symptom management was less than optimal.

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Baylor Center Director Tries Transplanting Bone Marrow in ALS

During the Jerry Lewis MDA Labor Day Telethon, MDA-funded researcher Stanley Appel announced that he and colleagues at Baylor College of Medicine in Houston have begun a clinical trial of bone marrow transplantation (BMT) for ALS.

Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor and a member of MDA's Medical Advisory Committee, has performed BMT on six people with the sporadic (nongenetic) form of ALS. It's too early to tell whether the treatment is working, but he's optimistic about the results, he says.

Adult bone marrow contains stem cells that generate red blood cells and the white blood cells that make up the immune system. These blood-forming cells make BMT a powerful (though often last resort) treatment for certain blood disorders and immune deficiencies.

Appel says there's a good chance that BMT will also work against ALS because recent studies, some of them from his lab, suggest that the disease involves inflammation, with a possible attack of the immune system against the body's own tissues. BMT, in which the recipient's bone marrow is first destroyed, then replaced, could suppress the activated immune systems of people with ALS, Appel believes.

Since laboratory experiments have shown that bone marrow stem cells can be induced to form nerve cells, some researchers favor the idea of using BMT to actually replace dead nerve cells in ALS.

But Appel is concerned that such an approach is premature. "We are five to 10 years away from getting that to happen," he says.

Stanley Appel

In his trial, Appel is following standard BMT protocol, first giving the participants high-dose radiation and immunosuppressants, then giving them intravenous injections of bone marrow donated from an immunologically matched relative. Follow-up, he says, will last at least one year.

The procedure is "very risky and aggressive," but other studies have been encouraging, Appel says. At an American Academy of Neurology meeting this year, a research group reported successful preliminary results in a BMT trial for severe multiple sclerosis, a neurological disease strongly linked to autoimmunity. Of 26 trial participants, 20 either stabilized or improved during treatment.

Other researchers have prolonged survival in mice with ALS by giving them systemic injections of umbilical cord blood (which contains bone marrow-like cells). The group — led by Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston — couldn't find a trace of the injected cells in the mice's brains or spinal cords, and concluded that the treatment may have acted through the immune system.

Appel likens the immune-inflammatory theory of ALS to the bow ties he's worn for almost all his adult life. "Sometimes they're in and sometimes they're not," he says, "Now, it's coming back into fashion."

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Cruisin' With Karen and Her PALS

by Bill Greenberg

First, we must make clear that there's absolutely no medical or scientific evidence to suggest that ALS can either be cured or effectively treated by taking a Caribbean cruise. But Karen Gorup of Rohnert Park, Calif., would like you to consider doing just that, and join her second annual cruise for people with ALS Feb. 2-9.

Gorup, who received her diagnosis in 1991, isn't willing to let ALS stand between her and a good adventure. And having proved that it can be done in a January cruise, she's determined to bring an even larger group this time.

"We have a journal on the Internet that tells all about our first cruise, this past January," she says. "There were 18 of us — both PALS [people with ALS] and caregivers. We were all at different stages in this disease, from ambulatory to very dependent." (See www.whoswho.8m.com/globe3.html.)

"It was an incredible journey," she recalls. "And it proves to those who think life is over with an ALS diagnosis that it's not, not by a long shot."

Fun and Sun

Gorup's group will cruise in style aboard Royal Caribbean's elegant Voyager of the Seas.

You'll depart from Miami Sunday evening, Feb. 2, and spend Monday being thoroughly pampered. Entertainment, formal and casual meals, lounging on deck and making new friends are some of the shipboard attractions.

Tuesday you'll hit the beach at Labadee, Hispaniola, a favorite spot with special beach wheelchairs. You'll spend Wednesday at Ocho Rios, Jamaica; Thursday at Georgetown on Grand Cayman; and Friday at Cozumel, Mexico.

On Saturday you'll relax in the lap of luxury as you make your way back to Miami, arriving Sunday morning.

Special Needs and Special Care

Karen Gorup (bottom left) and her husband/caregiver Roy (top left) led a cruise for people with ALS in January.

When Gorup first came up with the "wild and crazy" idea for a cruise for people with ALS, she knew she'd need expert help and advice to pull such an undertaking together.

Fortunately, she found Connie George Travel Associates of Glenolden, Pa. George has been in the travel business for 22 years and specializes in arranging cruises, tours and resort packages for people who use wheelchairs, walk slowly or have hearing difficulties.

When arranging for the special needs of travelers with ALS, George says, "I can't say enough about how much Royal Caribbean does for our clients. They've been phenomenal." For example, when told that some participants were on liquid diets, Royal Caribbean stocked up on plenty of Ensure Plus, even asking George to determine flavor preferences.

The Voyager of the Seas is holding 24 wheelchair-accessible cabins for the February cruise.

For more information about reservations, costs and medical arrangements, contact George at (888) 532-0989, or visit www.cgta.com, and click on "Karen's PALS Cruise."

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Noninvasive Ventilation Prolongs Life
If Used Right, MDA Clinic Director Says

Weakness of the muscles that control or influence breathing or swallowing is by far the most serious problem in ALS and requires decisions about whether and how to prolong life.

John Bach

A study in the July issue of the journal Chest says that noninvasive ventilation (mechanical ventilation without a tracheostomy, an incision into the trachea), along with mechanically assisted coughing as needed, can permit prolonged survival and delay the need for a tracheostomy for a significant number of ALS patients by more than a year.

Study author John Bach, a physical medicine and rehabilitation specialist who co-directs the MDA clinic at the University of Medicine & Dentistry of New Jersey in Newark, says that methods of ventilating those with ALS without resorting to tracheostomy may have failed in some cases because of the approach used.

A Better Approach

Bach's data show that 36 out of 166 ALS patients referred to his clinic — some 22 percent — were able to use continuous, noninvasive, positive-pressure ventilation with mechanically assisted coughing (for example, a CoughAssist) to prolong survival by at least 14 to 17 months and in some cases for several years.

Bach says key aspects of his respiratory treatment plan include:

offering nasal ventilation during the night and mouthpiece ventilation, which permits the user to take deep breaths as needed by grabbing the mouthpiece, during the day.

The journal Neurology, online at www.neurology.org, has started a new feature for nonprofessional readers. From the home page, click on "Patient Pages" to see a selection of free, readable articles.

In his article, Bach says that most ALS patients will eventually require tracheostomy ventilation for long-term survival. However, he notes, using noninvasive ventilation first has many advantages. It allows the patient and family time to decide about tracheostomy ventilation, which is more costly, generally more troublesome and uncomfortable, and often difficult to discontinue.

For information about the UMDNJ's noninvasive ventilation program, see www.theuniversityhospital.com/ventilation.

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Tips for Caregivers: Handling a Loved One's Depression

by Christina Medvescek

Many people with ALS maintain an amazingly upbeat attitude, but even the strongest people get down sometimes. If depression is becoming a concern, consider some of these strategies from experienced caregivers:

Provide meaningful work.

When her brother, Michael, got ALS, Deb Stanfa of Cherry Hill, N.J., took over daily operation of his business. But she brings him work every day and takes him into the office occasionally. "This makes him want to wake up in the morning," she says.

Even someone who can't "work" still can contribute.

"Since their intellectual abilities are unscathed, they really need to be included in all family and medical decisions, even when they reach the point where speech is impossible," says Carolyn Mildenberger of Pendleton, Ore., who cared for her husband, Paul, until his death from ALS in 1997. "This requires patience and effort but is really worth it in terms of emotional stability. It helped Paul feel like he was alive and kicking and involved."

Watch for opportunities to share a loved one's talents.

Helping others "pulls us out of ourselves," says Wendy Lustbader, author of Counting on Kindness (see review). Listening to a child practice spelling, helping a neighbor with tax returns or offering online gardening advice all are meaningful contributions.

Find special treats.

Flowers, massage, music, funny movies and animals all are proven mood lifters. Mild exercise and sunlight also are important.

"A big hug and a kiss and a walk around the garden" is how Craig Keeley of Ocean City, N.J., responded on the rare occasions when his late wife, Meg, needed a boost.

Another caregiving strategy is to create a "sunshine basket," by saving cards and notes that can be perused when spirits are drooping.

When Mildenberger's husband became confined to bed, she took pictures of local events and posted them on his wall. "He loved it!" she says. "He got to see the progress on the new Wal-Mart, the new city hall, etc."

Deal with anxiety.

"When someone yells or is rude, it often is to cover up their own anxiety," says Selma Kraft of Marina del Rey, Calif., a human services volunteer whose husband, Bernard, recently received an ALS diagnosis. Deal with the anxiety instead of taking it personally, she says.

For example, Keeley found that his wife's fear of choking was weighing on her mind, and a feeding tube was inserted rather early on, helping immensely.

Don't dwell, don't deny.

Don't allow the person with ALS to dwell on what's been lost, but rather focus on what still is possible, caregivers say. At the same time, don't deny the reality of the situation.

Talking honestly about emotions and crying together ultimately can be the best mood lifter of all.

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Book Addresses Kindness and Caregiving

Counting on Kindness: The Dilemmas of Dependency, by Wendy Lustbader, 1991, 206 pages. Free Press, (206) 985-5400, www.lustbader.com.

Lustbader, a medical social worker, has taken a unique look at caregiving — from the perspective of the person receiving the care. Her book is valuable both for people who find themselves having to "count on kindness" for survival, and for caregivers who may be struggling with their own roles in changed relationships.

Lustbader's message is that the journey from independence to physical dependency is complex and difficult but ultimately offers many treasures. Drawing on her decade of experience in home, hospital and nursing home geriatric care, she relates countless vignettes of caregivers and patients (many with ALS) that illustrate the issues of power, dependency and self-identity that occur for both sides.

"My hope is that this book will be passed back and forth between dependent people and those who assist them," Lustbader writes in the preface. "Ultimately, seeing each other's position may make it easier to find a balance point in the center of chaotic emotions and unpredictable circumstances."

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Oriole Park Site of Baltimore Art Exhibit

One of baseball's most impressive venues will be the site of a unique tribute to Lou Gehrig this month when Oriole Park at Camden Yards hosts "Transcending Barriers to Creativity: Featuring Artists with ALS."

Twelve works of art from the MDA Art Collection — all by artists who have ALS — will be on display in the park's Gallery of Sports Art Sept. 15-25. One of them, "Pride of the Yankees" by William Ross, depicts the famous moment when Gehrig bade farewell to baseball because of the disease that now bears his name.

The exhibit is made possible by MDA with the help of the Robert Packard Center for ALS Research at Johns Hopkins University, home of one of 28 MDA/ALS centers across the country.

The traveling MDA/ALS exhibit has been displayed at the Eleanor and Lou Gehrig MDA/ALS Center in New York and the MDA/ALS Center at Massachusetts General Hospital in Boston.

The park is located at 333 West Camden St., and the Gallery of Sports Art is at the south end of the Warehouse at Camden Yards, adjacent to Oriole Park.

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Investigators at Columbia University in New York, with funding from the National Institutes of Health, are studying coping, well-being and mood in 100 ALS patient-caregiver pairs.

Steven Albert, associate professor of clinical public health, heads the study, which will likely remain open for enrollment into 2003.

The investigators require that the person with ALS be terminally ill by hospice criteria or have a respiratory forced vital capacity of less than 50 percent of normal; that he or she not be demented; that the patient and caregiver live within 100 miles of New York City.

For more information, contact Steven M. Albert at (212) 305-2503 or sma10@columbia.edu, or go to www.mda.org/research/ct-living.html.

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Whether you've just received your ALS diagnosis, or you've been fighting the disease for years, you'll want to keep www.als-mda.org at the top of your computer's bookmark list.

MDA's ALS Division has designated two new MDA/ ALS research and clinical centers, bringing the total to 28 centers.

MDA/ALS Centers were opened in August at the Reeves Rehabilitation Center at University Hospital, an affiliate of the University of Texas Health Science Center at San Antonio, and at the University of Washington Medical Center in Seattle.

The San Antonio center is directed by neurologists Carlayne Jackson and Steven Lovitt. Those wishing to obtain more information or to schedule appointments at the center should call MDA's office in San Antonio at (210) 650-3181.

The Seattle center is directed by University of Washington School of Medicine Assistant Professors Greg Carter and Michael Weiss. Appointments can be scheduled by calling MDA's office in Seattle at (206) 283-2183.

Each center will provide ALS patients with care from physicians, a nurse coordinator, physical therapist, occupational therapist, speech therapist, and other professionals.

For a complete list of MDA/ALS centers, click here.

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