‘Hope Is Real’ Is Message of ALS Awareness Month

by Tara Wood

It’s a common belief among those affected by amyotrophic lateral sclerosis that educating the public about the disease is a crucial part of the overall effort to find better treatments or a cure.

With that goal in mind, MDA is again focusing special attention on ALS in May as it commemorates the nationally designated ALS Awareness Month.

"MDA’s commitment to fighting ALS is unequalled, and we hope to demonstrate the extent of our efforts during the month of May," MDA President & CEO Robert Ross said. "We want everyone to understand the devastation that this disease causes, and also to know that MDA is leading the fight to eradicate ALS."

Help and Hope

MDA’s ALS Division offers the most comprehensive range of services of any voluntary health agency in the nation, and leads the scientific battle against ALS through its aggressive, worldwide research program. MDA has invested more than $140 million in its ALS program to date.

In addition to the resources and programs offered by MDA’s ALS Division, many special, ALS-centered events are scheduled both nationally and locally this month.

Local MDA offices are urging media outlets to cover the disease by reporting on MDA events and profiling people with ALS.

On a national level, MDA is launching a new publicity effort aimed at drawing attention to ALS and the vast amount of work being done to defeat it.

"ALS Is Real — Hope Is Real" is the theme of a new public service announcement (PSA) campaign about MDA’s ALS program. The print, audio and videotaped ads feature Steven and Jennifer Bishop, MDA’s ALS Division co-chairpersons, and legendary New York Yankees first baseman Lou Gehrig.

The PSAs, being distributed to media outlets nationwide, emphasize MDA’s vital services and hope through research.

The Bishops are also prominently featured in a new series of MDA videos about support groups. (See "Bishops Lend Support.")

And in what has become an annual tradition, this issue of the newsletter includes an updated list of MDA’s ALS-related publications and resources, along with a list of MDA/ ALS centers.

Local Efforts

Dozens of MDA-sponsored events, such as seminars and fund-raisers, are marking ALS Awareness Month across the country. Here’s a sample:

• Near Olympia, Wash., an ALS Awareness and Wellness Conference on April 26 highlighted speakers who discussed quality-of-life concerns.
  
• An ALS Life Planning Seminar in Phoenix on May 10 will feature talks by health care experts from the local MDA/ALS center team and an estate-planning attorney.
  
• The Bishops will host A Gift of Time in Denver on May 15 to support ALS research. The MDA gala will include award presentations to longtime MDA National Vice President Jake Jabs and to Steven Ringel and Hans Neville, co-directors of the MDA/ALS center at the University of Colorado.
  
• An ALS Educational Seminar in Reno, Nev., on May 22 will include speakers who’ll address ALS research, home modification, physical and occupational therapy, and hospice and respite programs.
  
• The MDA office in Cedar Rapids, Iowa, is organizing the first annual Iron Horse Ball on May 30. Also, families affected by ALS will send letters to local newspapers to promote awareness, and individuals with the disease will be highlighted in May issues of a local newspaper.

  A special mailing, featuring the painting "Pride of the Yankees" by William Ross, is being sent to friends of MDA during ALS Awareness Month. Ross, who has ALS and lives in Bronxville, N.Y., depicts Lou Gehrig’s famous farewell address.

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MS Drug Shows Promise Against ALS

by Dan Stimson

A new study by Israeli scientists shows that the multiple sclerosis drug Copaxone protects mice against ALS, with an effect on survival greater than or equal to that of most other drugs tested in the mice. Though its mechanism of action is unclear, and other labs have seen far less impressive results, researchers are calling for a clinical trial of the drug in people with ALS.

ALS is a paralyzing, often fatal disease, caused by the death of muscle-controlling nerve cells called motor neurons. The disease process is poorly understood, and the only FDA-approved treatment, Rilutek (riluzole), extends life by just a few months.

Benjamin Brooks

MS is debilitating but doesn’t affect life span. It’s triggered by autoimmunity, a self-directed attack of the immune system, against myelin, a coating that insulates nerve cells and speeds the signals that flow between them. Copaxone (glatiramer acetate) slows the destruction of myelin and reduces the relapse rate in relapsing- remitting MS.

Although ALS and MS have little in common on the surface, some studies suggest that the immune system might influence the course of ALS. Though controversial, these studies motivated Michal Schwartz and her colleagues at the Weizmann Institute of Science in Rehovot, Israel, to test Copaxone against ALS in mice.

Mice with a genetic form of the disease received a single injection of Copaxone at 60 days of age, and thereafter they received it through their drinking water. (For MS, Copaxone is taken by injection.)

The average life span of the treated mice was 263 days, while that of untreated mice was 211 days — a difference of about 25 percent. The treatment also significantly delayed the onset of motor symptoms.

The mice carry mutations in the SOD1 gene, linked to hereditary ALS in humans in 1993. But since only about 10 percent of human ALS cases are hereditary — and only 3 percent can be traced to mutations in the SOD1 gene — Schwartz and her team also examined Copaxone’s effect on a more general injury to motor neurons. When a nerve is severed, the motor neurons passing through it tend to die back, but in mice given Copaxone, a significant number of motor neurons survived surgical cutting of the facial nerve.

Schwartz’s study, published online by the Proceedings of the National Academy of Sciences on March 31, has generated mixed reactions.

"I am delighted that this [study] is coming out," said neurologist Benjamin Brooks, who directs the MDA/ALS Clinical Research Center at the University of Wisconsin in Madison. "We have a lot of experience with Copaxone in our MS patients. We need to see if it will synergize with riluzole or other agents in ALS."

Serge Przedborski

Serge Przedborski, a neurologist at Columbia University in New York and a member of MDA’s Scientific Advisory Committee, is more cautious about the study, but still enthusiastic about a possible trial of Copaxone in people with ALS.

"I think the idea of modulating the immune system [in ALS] is a wonderful strategy, but I’m confused by what they report," he said. Using a different protocol from the one Schwartz’s group used, he’s also testing Copaxone in mice with SOD1-related ALS, and has seen only modest improvements, if any.

"I’m not saying that I don’t trust their data, but we know that in immunology, a small difference in protocol can make a big difference in results." He’s planning to retest Schwartz’s regimen in the mice and compare it to his own.

Another problem, he said, is that Schwartz didn’t explore how Copaxone protects against ALS in the mice. On the other hand, Copaxone has become an accepted treatment for MS, and no one is really sure how it works against that disease either. The drug, manufactured by the Israel-based TEVA Pharmaceuticals, is actually a synthetic fragment of a protein found in myelin.

Proneuron, based in Los Angeles, owns the rights to use Copaxone against ALS, and Przedborski has contacted the company about conducting a clinical trial, but hasn’t received a response.

Outside of such a trial, he said, "I would not encourage people [with ALS] to take Copaxone. At the very least, a small safety study should be done."

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MDA’s ALS DIVISION SERVICES

The assistance MDA provides to people with ALS and their families ranges from a team approach to specialized medical care, to videos, online chats and a monthly newsletter.

MDA’s ALS Division offers the most comprehensive services program of any voluntary health agency in the country. Those with ALS who are registered with MDA receive diagnostic and follow-up examinations at MDA’s nationwide network of 230 hospital-affiliated clinics or at 29 designated MDA/ALS centers at major medical institutions across the country.

MDA also offers support groups for those affected and their caregivers; assistance with purchase of wheelchairs, leg braces and communication devices; and an equipment loan closet with a range of helpful devices.

MDA’s ALS Web site, at www.als-mda.org, includes late-breaking news, MDA publications about ALS, back issues of The MDA/ALS Newsletter, and links to a list of ongoing and open clinical trials.

Also on the Web, MDA’s online chat rooms (www.mda.org/chat/calendar.html) include several regular ALS chats, chats for caregivers, special seminars with ALS experts and more.

The current regularly scheduled chats related to ALS are:

PALS WITH CHILDREN, held from 12 p.m. to 1 p.m. Eastern time every other Wednesday, hosted by Steven and Jennifer Bishop, co-chairpersons of MDA’s ALS Division.

LIVING WITH ALS, for people with ALS and their caregivers, at 4 p.m. to 6 p.m. every Monday, hosted by Jeff "raging bear."

MDA also hosts a series of clinical-research chats featuring guest experts. For the latest chat schedule, watch this newsletter or go to http://www.als-mda.org/chat/. And you can find complete transcripts of all MDA chats at http://database.azstarnet.com/html/mda/transcripts.

The following ALS-specific publications and videos are available at your local MDA office, from MDA National Headquarters at (800) 572-1717. Many of the publications can be found on the MDA/ALS Web site.

ALS: Maintaining a Positive Perspective: Steven and Jennifer Bishop, co-chairpersons of MDA’s ALS Division, share their positive approach to living with ALS. This 15-minute video is geared toward support groups and is available through local MDA offices.

ALS: Maintaining Mobility: A 149-page book written specifically for people with ALS to assist in prolonging muscle function and enhancing independence. Prepared by the MDA/ALS Center medical team at Baylor College of Medicine. Free.

ALS: Maintaining Nutrition: A 130-page book geared to physicians covering swallowing, diet, alternative feeding methods and tube feeding. Prepared by the MDA/ALS center medical team at Baylor College of Medicine. Free to anyone with ALS registered with MDA.

ALS Update: A 2-minute, 45-second review of ALS research progress as of summer 1998, hosted by MDA/ALS Center Director Stanley Appel. See at www.mda.org on RealPlayer (free download available).

Breath of Life and Breathe Easy: Two MDA videos about ventilation options for people with neuromuscular diseases. The first, at 25 minutes, is for medical professionals; the second, at 27 minutes, is for patients, families and caregivers.

Facts About Amyotrophic Lateral Sclerosis: An MDA pamphlet, revised in 2002, providing a detailed description of the disease’s symptoms, possible causes, treatments and current research. Free to those registered with MDA who have ALS.

Los Hechos Sobre la Esclerosis Lateral Amiotrofica: The Spanish translation of Facts About ALS. Free to those registered with MDA who have ALS.

The MDA/ALS Newsletter: A monthly publication designed to provide news, with a focus on current ALS research, and profiles of people living with ALS. Mailed free to those registered with MDA who have ALS.

The MDA Support Group and You: A 15-minute video for families who haven’t attended an ALS support group meeting, featuring the Bishops. It’s available through local MDA offices.

Meals for Easy Swallowing: A 125-page book containing a collection of recipes for easy-to-swallow foods and beverages, as well as suggestions on food preparation and service. Prepared by the MDA/ALS center medical team at Baylor College of Medicine. Free to those registered with MDA who have ALS.

Quest: MDA’s bimonthly national newsmagazine, containing in-depth stories about issues of living with any of the neuromuscular diseases MDA covers, as well as Association activities, helpful products and research news. Mailed free to those registered with MDA; $14 yearly subscription for others.

When a Loved One Has ALS: A Caregiver’s Guide: A comprehensive, 60-page, illustrated manual filled with practical advice for meeting the medical, emotional, financial and everyday challenges faced by primary caregivers for people with ALS, and including an extensive list of resources. The primary caregiver for anyone with a diagnosis of ALS who is registered with MDA can receive a free copy of the guide, which was revised and updated in 2002. For others, there’s a charge of $10.

With Strength and Courage: Understanding and Living With ALS: A 24-minute video geared for newly identified ALS patients. Hosted by actor Ed Fry and featuring MDA/ALS Center Director Stanley H. Appel, the video was produced in 1996. It’s available for viewing from local MDA offices.

Your MDA/ALS Support Group: Getting Started: A 15-minute video hosted by the Bishops to help a new support group get going. It’s available through local MDA offices.

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A NEW LIFE WITH ALS

Support Groups — A Safe Haven

by Steven and Jennifer Bishop

A support group is a safe haven — and much more. Everyone whoattends a support group may get different things out of the meetings.

Right after being diagnosed, it was important for us to participate in our MDA/ALS support group because we were treading water in an uncertain time in our life. But we didn’t know what to expect from the meetings, and frankly we were a little hesitant to go for fear of being exposed to more than what we wanted to see.

Many Benefits

As it turns out, going to the MDA support group for people with ALS in the Denver area has become one of the highlights of our month. We’ve received two primary benefits — and many other fringe benefits.

First, since the beginning of our life with ALS, support groups have exposed us to people who were ALS veterans. They were filled with knowledge and advice on what things help, what doesn’t help and what they would change about their lives. We call learning from them "not having to reinvent the wheel."

Second, through our support group, we’ve been able to give back and feel useful to other families by providing our perspective and positive attitude.

The fringe benefits include forming new friendships and finding a safe place to talk about all the challenges and victories we experience with ALS, among people who understand firsthand.

The closeness and shared learning that arise from meeting regularly with other people are the main reasons for attending support group. But the outside information provided by the MDA coordinators in the form of guest speakers is also invaluable. At our meetings, we’ve had speakers and discussions covering a range of subjects, including gadgets, physical therapy, augmentative speech devices, hospice care, denial and grief counseling, insurance, assisted living, family issues, cultural issues and spiritual issues of all kinds.

There’s an important social aspect to support groups as well. We enjoy hearing about everyone’s trips, community involvement and even the dark humor that only families with ALS can truly appreciate. Humor is such an important coping mechanism with this disease.

Make It Your Own

The MDA support group in your community is yours for the taking. Make it your own and encourage others to attend. Our group includes patients, caregivers, mothers, fathers, sons, daughters, brothers, sisters and friends (some of the people with ALS don’t even live in the same state as the family members in our support group). You might be surprised as to what you get out of these gatherings.

If you’re planning to attend a support group meeting for the first time, check out the subject to be discussed. If it happens to be hospice, for example, that may be an important subject, but one you may not be ready for if you’re in the early stages of ALS. Perhaps you’d prefer to wait for the next meeting.

Or, if you don’t like the first meeting you attend, give it a second chance. These sessions are very dynamic in their content, so one month’s interactions could be entirely different from the next.

In closing, we’re grateful to MDA for facilitating these support groups for us. They’re an incredible tool to aid us in our life with ALS.

One thing we’ve learned in our new life: We can’t do it alone. MDA is there for us, not just leading the research efforts, which give us hope, but providing top-notch services as well, including support groups where we can be among friends.

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 4-year-old son.

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Bishops Lend Support to Support Groups

As they write in "A New Life With ALS," MDA support groups for people with ALS and their families and caregivers are an important part of Steven and Jennifer Bishop’s life.

So it should come as no surprise that the co-chairpersons of MDA’s ALS Division are sharing their enthusiasm for support groups in a new three-part video series designed to help MDA field offices encourage support group participation.

In the first tape, "The MDA Support Group and You," the Bishops speak to families who’ve just received a diagnosis of a neuromuscular disease but haven’t yet attended a support group meeting. Their message highlights some of the benefits of attending MDA support groups and is intended to dispel any doubts or apprehension viewers may feel about sharing personal experiences and emotions in a group setting.

"Your MDA/ALS Support Group: Getting Started" is intended for use at a new support group’s inaugural meeting. The video welcomes attendees to MDA’s nationwide support group network, and identifies some of the types of support and information available through this program.

The third video in the series, "ALS: Maintaining a Positive Perspective," is aimed toward existing ALS support groups, and is the next best thing to having the Bishops as guest speakers at your group.

In each video, the Bishops are introduced by noted entertainer and MDA National Vice President Tony Orlando.

Each video runs for approximately 15 minutes. For more information on this practical and informative series, please check with your local MDA office.

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‘Share the Care’ Circles: Asking for Help Can Be the Hardest Part

by Christina Medvescek

Share the Care circles are groups of volunteers who provide organized, long-term, in-home caregiving support to people affected by chronic illnesses.

These circles aren’t just for those with large groups of friends or church affiliations. Anyone with a need and the ability to ask for help can form a caregiving circle. One of the hardest parts of doing so is simply getting over the resistance and getting started.

Why Organize a Formal Circle?

Many people with ALS are used to being the givers, not the receivers of help. They and their immediate caregivers often try to do it all, calling on a spouse or the same one or two helpers when necessary (often with increasing feelings of guilt) and gratefully accepting any unsolicited help, whether or not it meets their immediate needs.

This type of informal arrangement can work fine in the beginning, but as ALS progresses and needs become greater, a more organized approach is required to prevent burnout. Ideally, you should start organizing your circle before the need becomes acute, in order to ensure that help is firmly in place when you need it.

There are benefits to all parties in creating a formal caregiving circle:

For primary caregivers: An organized circle provides a reliable schedule tailored to the family’s needs. Caregivers actually end up asking for help less often. Because of the way jobs are assigned, primary caregivers don’t have to worry that volunteers are doing something they don’t want to do. Best of all, organized circles allow caregivers more quality time with their loved ones and more time to attend to their own needs.

For volunteers: Anyone who has ever experienced the high of making a difference in someone’s life knows exactly what volunteers get from Share the Care. Organized circles also allow volunteers to schedule help at their convenience, pick jobs they like to do, and have the support of a volunteer team, so everyone knows he or she isn’t alone.

For people with ALS: An organized circle ensures a regular stream of visitors, combating the isolation that may come with ALS. Patients often are relieved that their primary caregivers are getting a break.

And letting people help is a unique service people with ALS can provide. Anne Swisher, MDA health care services coordinator in Houston, asks, "If they don’t take their turn on the receiving end, what will all the givers do?"

Suzie Cowan of Memphis, who organized a Share the Care circle three years ago for David Jayne of Rex, Ga., agrees. "Please ask for help, because it makes everyone’s life better!"

Whom to Ask?

A caregiving circle starts by asking for help from just one or two people. These people in turn make calls and organize volunteers.

Suzie Cowan lives in a different state from her longtime friend David Jayne, who has ALS and relies on a ventilator, power wheelchair and computer speech program. Cowan organized a Share the Care caregiving circle for Jayne three years ago when he and his wife divorced. The circle "allows me to live my life as fully as possible," Jayne says.

"The circle should not be put together by the [primary] caregiver," Cowan emphasizes. "The caregiver already has his or her hands full. Plus, it’s hard for volunteers to turn down immediate family, but with an outsider they can be brutally honest."

Consider asking good friends or neighbors with a talent for organizing, extended family members, a social worker or counselor, or someone from a religious or service organization. (It helps if you belong to the organization, but that isn’t always necessary.)

Check with your local MDA office to see if the staff knows of any volunteers who may be interested. Some towns also have volunteer centers.

Another resource is the Care Team Network, a small nonprofit training group in Birmingham, Ala., that helps caregiving circles get off the ground. Although this group won’t start or run the circle for you, they can offer information, training, materials, advice and support. Call toll-free (866) 435-1391 or visit www.careteam.org.

Next, organizers should sit down with the caregiver and the person with ALS and brainstorm whom to invite to join the circle. Possibilities include people from work, school, community or hobby activities, and church; neighbors, former co-workers, etc. Go through address books, old yearbooks and the holiday card list. Make a personal appeal to a group.

Don’t rule anyone out. Even people who don’t live nearby may be able to help, for example, by calling an insurance company, coordinating a schedule or simply becoming an e-mail buddy.

The First Meeting

Once names of those willing to help have been identified, organizers should call each one personally and explain the situation. These calls should emphasize that no one will have to do it all, and that volunteers can contribute as much or as little as they want. Invite interested people to an organizational meeting.

Both the book Share the Care and the Care Team Network offer sample formats and forms for these organizational meeting. Key elements include: knowing in advance the family’s specific needs; providing participants with information about ALS and its effects; and gathering information about the kinds of jobs participants are willing to do and their availability to do them.

The resulting circle doesn’t need to be large — about a dozen will do. If not enough people join, start with what you have and hold a second meeting later. Circles often grow over time.

"Don’t be afraid to ask people," advises Mark Reiman, an ALS patient from Seattle whose caregiving circle was organized two years ago. "There will probably be a few who will not want to or be able to, but most will be enthusiastic.

Beginning with this issue, The MDA/ALS Newsletter will examine the basics of organizing and running a volunteer caregiver circle, and the ways in which this concept has benefited families coping with ALS. Information will be drawn from the experiences of volunteers, caregivers and people with ALS, as well as 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).

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ALS Research Roundup

Researchers at Neurology Meeting Explore SOD1, New Drugs, Stem Cells

Scientists at the 55th annual meeting of the American Academy of Neurology, held in Honolulu in early April, showcased several new studies on ALS, including:

New Theory on SOD1’s Role in ALS

Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, described findings on SOD1, the renegade protein underlying some forms of ALS.

Mutations in the gene encoding SOD1 are responsible for about 25 percent of familial ALS cases, and abnormalities of the protein are suspected in some sporadic ALS cases. The normal protein protects cells against oxidative stress — a buildup of free radicals. The mutant protein appears to gain a function that’s toxic to nerve cells, but researchers don’t understand what that new function is.

Robert Brown

Brown has evidence that the mutant protein might trigger a breakdown of the mitochondria — the energy-producing factories in cells. The mutant protein, he showed, is capable of assembling into a tubelike structure and inserting itself into the outer surface of mitochondria. The resulting "pores" then cause the mitochondria to swell and release a compound called cytochrome c, a signal that tells the cell it is dying.

This new theory fits with previous research implicating mitochondrial dysfunction and cell suicide (or apoptosis) in ALS, and suggests that these events are prime targets for therapy.

New Anti-Glutamate Drugs

Raymond Roos of the University of Chicago reported that compounds known as NAALADase inhibitors are effective against ALS in cells and in mice.

NAALADase is an enzyme that converts the substance NAAG into glutamate, a brain chemical believed to accumulate to toxic levels in people with ALS. NAALADase inhibitors, developed by Guilford Pharmaceuticals, block the NAAG-glutamate pathway.

Roos found that the inhibitors caused a 30 percent increase in the survival of motor neurons harboring mutations in the SOD1 gene. And when given to mice with SOD1-related ALS, the inhibitors delayed symptoms of the disease, and prolonged survival from 190 days to 219 days.

Roos said the inhibitors might work not only by decreasing glutamate, but also by increasing NAAG, which has been shown to protect nerve cells from injury. This could make them superior to the glutamate-blocking drug riluzole (Rilutek), currently the only drug approved by the FDA for treating ALS.

Bone Marrow Stem Cells Tested in Mice

Stefania Corti of the University of Milan in Italy showed that bone marrow-derived stem cells are capable of — but not efficient at — forming neurons in mice with SOD1-related ALS.

Previous studies have shown that stem cells — master cells capable of regenerating the body’s tissues — can repair the nervous system and even restore movement in the mice. However, most of those studies involved injections of embryonic stem cells, a treatment that might never reach the clinic for ethical and political reasons.

Corti gave SOD1 mice abdominal injections of bone marrow stem cells marked with a fluorescent protein, and examined brain and muscle tissue from the mice four months later. Less than one-tenth of 1 percent of neurons in the brains of the mice were derived from the injected cells.

Surprisingly, some of the stem cells made new cells in cardiac and skeletal muscle. Since the stem cells rarely formed new muscle when injected into normal mice, Corti believes that SOD1-related ALS might cause direct damage to muscle tissue.

Narcotics, NSAIDS Might Affect ALS Risk

Stacy Rudnicki, director of the MDA clinic at the University of Arkansas, reported a possible connection between early-onset ALS and methamphetamine (MET) abuse. Examining the medical histories of 61 ALS patients seen at the university’s neurology clinic between July 2000 and January 2003, Rudnicki discovered that a total of six — 10 percent — had used MET chronically, or intensely for a short period of time.

Among patients who had used MET, average onset of the disease was at 36 years of age; among those who hadn’t used MET, it was 58 years. In all, 40 percent of patients under age 45 reported a history of MET abuse.

Meanwhile, studies probing a link between ALS and nonsteroidal anti-inflammatory drugs (NSAIDS) — aspirin, ibuprofen and a bevy of new-generation arthritis drugs — came up with conflicting results.

Lorene Nelson at Stanford University in Stanford, Calif., examined NSAID use in 187 people with ALS and 393 people without the disease. Nonaspirin NSAID use was associated with a twofold increased risk of ALS in men, but coincided with a slightly reduced risk of ALS in women.

A study from the MDA/ALS Clinical Research Center at the University of Wisconsin in Madison suggests that treatments for arthritis and other bone and joint diseases — perhaps NSAIDs — might delay the onset of ALS. The study identified 736 ALS patients who had pre-existing bone and joint disease, and found that ALS symptoms in that group appeared significantly later (60 years) than in ALS patients without pre-existing bone and joint disease (53 years).

Neurons and Glia Engaged in Vicious Cycle?

John Weiss, co-director of the MDA/ALS Center at the University of California, Irvine, presented evidence for a deadly interaction between motor neurons and glial cells.

Glial cells called astrocytes protect neurons from glutamate toxicity by vacuuming up excess glutamate. In ALS, glutamate uptake is impaired, but the reason for the defect has been unclear.

By studying the cells in a laboratory dish, Weiss found that free radicals generated by motor neurons — perhaps triggered by a temporary rise in glutamate — can damage the glutamate uptake system of astrocytes. In ALS, this interaction might create a "feed-forward" cycle that causes progressive damage to both cell types.

Weiss’ study was published in the April 1 issue of the Journal of Neuroscience.

Open-Label Study of Neurodex Opens

The experimental drug AVP-923 (Neurodex), which is made by Avanir Pharmaceuticals of San Diego, and has shown promise in treating neurologically related spells of laughing and crying, will be put through further testing, the company says.

Episodes of uncontrolled emotional manifestations — known as pseudobulbar affect — are generally disconnected from actual feelings and are thought to be a result of a loosening of control of some parts of the brain over others during the course of certain degenerative neurological conditions.

At a meeting hosted by the Australian Motor Neurone Disease Association in Melbourne in November, investigators reported that the 70 people with ALS who took AVP-923 — a combination of dextromethorphan and quinidine — had significantly better emotional control than did people who received either of the drugs alone.

Now, Avanir will test AVP-923 in an open-label trial of people who have pseudobulbar affect associated with ALS, stroke damage, Alzheimer’s disease or multiple sclerosis. (In an open-label study, investigators and participants know what medication is being taken.)

The study will take place at some 30 sites across the country. For more information, contact INC Research (a Raleigh, N.C., company overseeing the study for Avanir) at (888) 255-5300.

INC’s Web site is www.incresearch.com. At Avanir’s site, www.avanir.com, you can find more information by clicking on "Product R&D" and then on "Neurodex."

Government to Study Veterans With ALS

If you’re a U.S. military veteran with ALS, the Department of Veterans Affairs wants to hear from you.

The department wants to identify all living veterans who have ALS, follow their health status, collect data that will be available for future studies examining the possible causes of ALS, and provide a way for the VA to inform veterans with ALS about research.

Participants will be asked to complete a brief telephone interview, which will include basic questions about their disease and their military history. Follow-up interviews will be conducted twice a year.

For more information, go to http://hsrd.durham.med.va.gov; click on "ERIC" (Epidemiologic Research & Information Center) and then on "ALS Registry."

To inquire about participation, call (877) 342-5257; or e-mail Barbara Norman at norma003@acpubduke.edu.

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ALS Online

Clinical-Research Chats

In keeping with the observance of ALS Awareness Month, the May and June entries in MDA’s clinical-research online conference series will focus on issues of interest to those with ALS. All online conferences begin at 5:30 p.m., and all chat times are Eastern time.

May 14 — ALS and Respiratory Issues, led by Edward Anthony Oppenheimer, a specialist for more than 30 years in pulmonary and critical care medicine.

May 28 — Adult Neuromuscular Diseases, led by Michael Weiss, co-director of the MDA/ALS Center at the University of Washington Medical Center in Seattle.

June 11 — Quality of Life With Neuromuscular Disease, 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 Medical Center in Seattle.

Go to www.mda.org/chat/cli-res-host.html for details.

Let’s Chat

"MDA’s ALS Division Services" lists some MDA online chat sessions devoted to ALS. But a quick glance at www.mda.org/chat/calendar.html reveals other regular MDA chat sessions that might interest those with ALS.

You might want to discuss wheelchair-related issues at Wheelchair Gang, held every Wednesday from 10 p.m. to 11 p.m.; Positive Thinking, every Thursday from 8 p.m. to 9 p.m.; or A Service Dog Chat, held the third Friday of each month from 9 p.m. to 10 p.m.

At every MDA chat session, you’ll find people who are ready to share experiences, laugh, commiserate, swap stories and form friendships. And don’t worry if your spelling isn’t great or you type slowly. Almost everyone you meet in an MDA chat room has one of the 40-plus neuromuscular diseases covered by MDA, and patience prevails.

To date, more than 4,000 people have found MDA chat to be a corner of cyberspace where they feel right at home. Registration for MDA chat sessions is free and easy, and helps ensure a safe environment. Registration information is kept strictly confidential.

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MDA/ALS Centers

MDA’s ALS Division has designated 29 facilities at major medical institutions as ALS centers, indicating that they’re focal points of MDA’s ALS program. However, all of the 230 MDA clinics across the country serve people with ALS. For the names, directors and contact information for each MDA/ALS Research and Clinical Center, go to www.mda.org/clinics/alsserv.html.

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