Index to this Issue:

MDA Highlights ALS Awareness Month MDA Issues New Book on ALS ALS Research Roundup Researchers Target SOD1-Linked Familial ALS Group IDs SOD1 Blockers Hairpin RNA Keeps SOD1 Away Emory Center to Study Familial ALS New Drug Class Targets Cell Death No Correlations Found in Corn Belt Study ALS Research - The Beat Goes On Saving Energy ECUs Can Help You Take Control at Home MDA ALS Division - Research, Services, Information MDA Opens 34th ALS Center MDA/ALS Research Centers

On the Cover: Shreveport, La. — When Janet Talley’s best friend and top-ranked amateur golfer Barbara Fay White received an ALS diagnosis, Janet wanted to do something to raise public awareness of the disease. She decorated her 1989 Blazer with images of the Crooked Hollow Golf Club, which Barbara built, as well as information on donating to the ALS Division of MDA. Barbara died in October but the car still makes daily rounds. “If people get a giggle out of it, that’s OK,” Janet says of the vehicle. “I feel like if they see the name [ALS], it just keeps it in the front of their minds.”

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MDA Highlights ALS Awareness Month

by Kathy Wechsler

When most people hear of amyotrophic lateral sclerosis (ALS), baseball legend Lou Gehrig immediately comes to mind. But ALS isn’t just a famous sports figure’s disease. It could happen to you, your mother, your grandfather, your neighbor, your best friend or your child. ALS doesn’t discriminate.

That’s why MDA’s ALS Division is leading the fight against ALS through its wide range of health care services and its comprehensive research program. During May — ALS Awareness Month — MDA offices across the country redouble their efforts to spread the word about this life-threatening disease by providing educational conferences and seminars as well as ALS-centered events and public information.

New Book

MDA commemorates ALS Awareness Month on a national level with the release of Everyday Life With ALS: A Practical Guide, an expansion of the 1980 publication ALS: Maintaining Mobility. Focusing on living with the disease, this book explores the topics of mobility, exercise, respiratory care and communication.

MDA clients who have ALS are eligible for a free copy of the book, which will also be available in a CD version. MDA clinics and offices will also receive copies of the guide, which will be offered for sale as well. (To read an excerpt from the book, see "Saving Energy.")

PSAs Available

ALS-themed public service announcements (PSAs) are set to run on television and in magazines and newspapers nationwide. Featuring Christopher and Reda Rice, co-chairs of MDA’s ALS Division, these PSAs chronicle one family’s struggle with the disease.

Local Events

Here is a sample of some ALS Awareness Month events scheduled this month. Contact your local MDA office for information on events in your area.

San Francisco

People with ALS are invited to an ALS Ask the Experts seminar on May 5 at the Cathedral Hill Hotel, where a panel of physicians will discuss the latest research and hold a question/answer session. Gateway to a Cure is a dinner/auction event held at the Julia Morgan Ballroom at the Merchant Exchange Building. Tickets cost $200, and all proceeds go to ALS research.

Charlotte, N.C.

A presentation and luncheon will be held on May 1 at the ALS Friends and Family group meeting, allowing people to learn about the services provided by the MDA/ALS Division, as well as to meet MDA staff and the MDA/ALS Center team. An award reception featuring local officials, fire fighters and the clinic team on May 5 will honor South Carolina’s MDA Personal Achievement Award recipient Angelo Sciulli, a photographer with ALS.

Tacoma, Wash.

The Tacoma Rainiers minor league baseball team will have an ALS Awareness game on May 21 at Cheney Stadium. There will be a Turn Back the Clock auction where visitors can bid on signed jerseys that will be replicas of those the team wore during the one season they were called the Tacoma Yankees. The first pitch will be thrown by Harry Aldrich, who has ALS and is a former fire fighter for the Tacoma Fire Department. There are plans for some 50 Harley-Davidson riders to come roaring onto the field to throw additional ceremonial “first” pitches.

Shawnee Mission, Kan.

On May 2, Kansas Gov. Kathleen Sebelius will sign a proclamation, announcing May as ALS Awareness Month for the state. An Education and Resource Day is planned for May 14. It will be an open-house event with important resources such as transportation, ventilation equipment and home modification companies represented.

St. Louis

Alan Pestronk, director of the MDA/ALS Center at Washington University will lead a discussion on ALS research on May 4. A Living With ALS Workshop will feature speakers addressing daily living issues, nutrition and emotional aspects of living with ALS.

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MDA Issues New Book on ALS

This month MDA is publishing a new 150-page book of practical information for people with ALS.

Everyday Life With ALS: A Practical Guide is being distributed to MDA offices and clinics. Anyone with ALS who’s registered with MDA may request a free copy through the local MDA office.

Copies of the extensively illustrated book will also be offered for sale to libraries and health care professionals outside the MDA network. A CD-ROM version will also be available.

The book is a revision and update of ALS: Maintaining Mobility, which was published by the MDA/ALS Center at Baylor College of Medicine in the 1980s. The new publication has chapters on equipment needed for daily living, energy-saving ideas, home modification, mobility equipment, respiratory and speech issues, transfers and exercise. In addition there’s an extensive list of resources.

Publication was funded in part by a grant from the Deana and Sheldon Katz Fund, and advertising support from DynaVox Technologies, J.H. Emerson Co. and Permobil.

To read an excerpt from Everyday Life With ALS: A Practical Guide, see "Saving Energy."

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ALS RESEARCH ROUNDUP

Researchers Target SOD1-Linked Familial ALS

Familial ALS (FALS) that results from mutations in the gene for SOD1 accounts for only about 2 percent of ALS cases, but the disease provides unique treatment targets for scientists to hit. A large variety of SOD1 mutations can cause the SOD1 enzyme to become harmful instead of helpful, so blocking SOD1 production or changing its behavior are good strategies for this form of ALS.

Group IDs SOD1 Blockers

Recently, a group that included Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, announced it had identified several small molecules that can stop the abnormal SOD1 protein from unfolding and clumping, two activities that confer toxicity to the protein.

Robert Brown

The investigators, who published their results in the March 8 issue of Proceedings of the National Academy of Sciences, screened some 1.5 million molecules to see which ones would “dock” at the right place on the mutated SOD1 molecules. Of the 100 molecules with the best activity, 15 significantly interfered with toxic SOD1’s behavior.

Hairpin RNA Keeps SOD1 Away

Two groups announced online March 13 in Nature Medicine that they’d each developed methods of keeping dangerously mutated SOD1 protein molecules from being produced.

Both used a relatively new technique known as RNA interference. DNA, which is double-stranded, is normally converted into single-stranded RNA, which is then used by a cell as instructions for manufacturing a protein.

Scientists can block protein synthesis at the RNA stage by exposing it to compounds known as short hairpin RNA molecules, which curve back on themselves like hairpins and then direct the breakdown of targeted sequences of single-stranded RNA.

G. Scott Ralph at Oxford (Britain) Biomedica and colleagues used an equine infectious anemia virus (EIAV) shell to produce and deliver short hairpin RNA pieces. When they injected these into the muscles of mice with SOD1-related ALS, they saw reduced SOD1 production, improved survival of nerve cells, and better motor performance in the animals. ALS symptoms were delayed by more than 100 percent (appearing at an average of 202 days compared to 94 days in the untreated group), and survival improved by about 78 percent.

Cedric Raoul at the Federal Polytechnical School of Lausanne (Switzerland) and colleagues conducted similar experiments, reporting their results online at the same time as the British group.

This team used parts of the vesicular stomatitus virus G (VSV-G) to deliver the hairpin RNA and injected the viral delivery vehicles into the spinal cords of the mice.

Their strategy likewise substantially retarded the onset and progression of SOD1-related ALS in mice.

Emory Center to Study Familial ALS

Jonathan Glass, who directs the MDA/ALS Center at Emory University in Atlanta, suspects that people with familial ALS may respond differently from people with sporadic ALS to treatments.

Glass plans to collect data from as many people with FALS as possible, after which he hopes to conduct clinical trials specifically in these patients and their at-risk relatives.

Adults with FALS or at risk for FALS (having two or more family members with the disease) can contact Meraida Polak in Atlanta at (888) 413-9315 or at mpolak@emory.edu.

New Drug Class Targets Cell Death

MDA research grantee Merit Cudkowicz and MDA/ALS Center director Robert Brown, both at Massachusetts General Hospital in Boston, were part of a study that found that a class of compounds called histone deacetylase (HDAC) inhibitors seem capable of stopping a “cell death program” that nerve cells undergo in ALS, extending the lives of mice with the disease. Robert Ferrante, neurology researcher at the Edith Nourse Rogers Memorial Veterans Hospital in Bedford, led the study.

Merit Cudkowicz

The investigators, who published their findings online March 29 in the Journal of Neurochemistry, injected the HDAC inhibitor sodium phenylbutyrate into mice with ALS. They found that a dose of 400 milligrams per kilogram of body weight per day increased survival in the treated mice by an average of 27.5 days compared to untreated mice.

During the study, the treated mice did better than the untreated ones on tests of motor performance. They also lost weight more slowly and lost less muscle mass in their hind legs. The treated mice retained more nerve cells, and their cells looked closer to normal than those of the untreated mice.

Citing previous experiments, the researchers say they think the sodium phenylbutyrate probably interfered with the activation of “cell death” enzymes (caspases) and activated a “cell life” substance (bcl-2).

Ferrante and MDA-supported Cudkowicz and Brown are coordinating a multicenter study of sodium phenylbutyrate in people with ALS, with support from MDA and the Veterans Administration.

Trial sites are Massachusetts General Hospital in Boston, Johns Hopkins University in Baltimore, and VA centers in Iowa City, Iowa; Lexington, Ky.; Bedford, Mass.; Syracuse, N.Y.; and Durham, N.C.

For more information, call the VA ALS Research Unit in the Boston area at (781) 687-2884. You must be a veteran to participate at a VA site (all sites except Mass General and Johns Hopkins).

For information about the Mass General site, contact Kimberly Kruczek at
(617) 726-6803 or kkruczek@partners.org; for the Hopkins site, contact Lora Clawson at (410) 955-8511 or lclawson@jhmi.edu.

No Correlations Found in Corn Belt Study

Naomi Bienfang at the University of Northern Iowa studied 24 people with ALS and 30 people without ALS in the U.S. “Corn Belt” states of Iowa, Minnesota, Nebraska and Illinois. She found no significant differences between the two groups on any measurement when the participants’ blood cells were exposed to the insecticide chlorpyrifos.

The data in this limited study don’t support any connection between ALS and exposure to insecticides in the environment.

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ALS Research - The Beat Goes On

by Margaret Wahl

In the December issue of this publication, we brought readers up to date on several major research trends (see “ALS Research,” December 2004). In this issue, we revisit these to check on progress in the last five months.

Antioxidants

The antioxidant coenzyme Q10, having passed several preliminary tests, is now being evaluated at high doses at some 20 centers in the United States. The National Institutes of Health (NIH) is funding the study.

And AEOL 10150, developed by Aeolus Pharmaceuticals of Research Triangle Park, N.C., is undergoing testing at several MDA/ALS Centers. This new drug, a metalloporphyrin type of antioxidant, substitutes manganese for iron in the center of a molecule of porphyrin, a blood pigment.

Neurotrophic Factors

Two neurotrophic factors, “nerve-nourishing” compounds present in the body, are under consideration for treatment of ALS.

Myotrophin, a brand name for insulin-like growth factor 1 (IGF1), is in its third large-scale clinical trial, with support from the National Institutes of Health, the pharmaceutical company Cephalon and other sources.

Vascular endothelial growth factor (VEGF) has shown promise in studies of rodents with ALS, when delivered as a gene and as a protein. Peter Carmeliet, at the University of Leuven (Belgium) and Flanders (Belgium) Interuniversity Institute for Biotechnology, has MDA support to develop VEGF for ALS.

Stopping Glutamate

NIH is supporting a study of the antibiotic ceftriaxone, scheduled to begin later this year at approximately 40 sites, many of them MDA-supported ALS centers. Physician Merit Cudkowicz at the MDA/ALS Center at Massachusetts General Hospital in Boston is the lead investigator.

Paul Gordon

Laboratory studies suggest ceftriaxone improves the removal of the potentially toxic chemical glutamate from the area around nerve cells. Recent experiments in ALS-affected mice showed that those treated with ceftriaxone lost fewer nerve cells and lived longer than untreated mice with ALS.

Calming Immune System

Unfortunately, a promising study of celecoxib (Celebrex) failed to show benefit in ALS.

But the drug minocycline, on the market to treat certain infections, has shown potent anti-inflammatory actions as well as other biochemical activities that may be of benefit in ALS. MDA and NIH are supporting a multicenter study of minocycline.

“Inflammation may promote and propagate nerve injury,” says Paul Gordon, co-director of the MDA/ALS Center at Columbia University in New York and an investigator on the minocycline study.

Saving Cells

In addition to its anti-inflammatory effects, minocycline has been found to exert a positive effect on the survival of nerve cells by interfering with a cell death program that ALS researchers want to interrupt.

“Minocycline seems to impact neurodegeneration at multiple levels,” Paul Gordon says. “One laboratory has shown that it protects mitochondria [which produce cellular energy], and multiple laboratories have shown that it acts as both an anti-apoptotic [anti-cell death] and an anti-inflammatory agent.”

Elsewhere, researchers at Maas Biolab have received Orphan Drug designation from the Food and Drug Administration to develop cyclosporine for ALS.

Muhammad Al-Lozi conducts a test on ALS patient Glen Houston at Washington University in St. Louis, as part of a clinical trial evaluation; in background, Linda Houston, Glen’s wife, and Anne Connolly, child neurologist.

Cyclosporine has FDA approval as an immunosuppressant to treat transplant reactions and arthritis. In ALS, it appears to protect mitochondria.

Because cyclosporine doesn’t normally enter the nervous system, the investigators plan to deliver it directly into the fluid around the spinal cord in a future clinical trial.

A class of compounds called histone deacetylase (HDAC) inhibitors is under scrutiny by MDA-supported Merit Cudkowicz at Mass General. She and her colleagues have conducted tests in mice that suggest these drugs can silence cell “death” genes and activate cell “life” genes, changing a genetic program that nerve cells launch in response to stress.

A clinical trial of an HDAC inhibitor is now under way (see ”New Drug Class”).

New Genes, New Pathways

Identification of ALS-associated genetic changes can lead to better diagnosis, but, importantly, each new genetic finding can also reveal another ALS-causing mechanism and a potential treatment target.

Hfe

This fall, MDA grantee James Connor at Pennsylvania State College of Medicine, and colleagues, identified variations in a gene called Hfe as a likely risk factor for ALS. The Hfe protein normally limits the uptake of iron by cells.

In December, a British group announced that it too had found a similar association of Hfe mutations and ALS in a separate group of patients, adding to support for an ALS-Hfe connection.

Senataxin

Last spring, an MDA-supported group led by Phillip Chance at the University of Washington-Seattle identified mutations in the gene for senataxin as the cause of a rare juvenile-onset form of ALS. The lab is now developing a mouse with a senataxin mutation.

Alsin

A team that received MDA support first linked the gene for the protein alsin to a childhood-onset form of ALS in 2001. Alsin may play a role in maintaining cell shape and transport of cellular materials.

This year, researchers in Canada announced they had generated a mouse without alsin that develops progressive motor dysfunction. Elsewhere, a group that included MDA grantee Guy Rouleau at Montreal General Hospital found that mice have alsin in the cerebellum, a brain stucture not previously associated with ALS.

VAPB

Mayana Zatz, at the University of Sao Paolo (Brazil), and colleagues, first identified a mutation in the gene for VAPB (vesicle-associated membrane protein B) as the cause of ALS in several families last year. Zatz now reports that she’s recently identified at least one more family with a VAPB mutation.

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Saving Energy

Adapted from Everyday Life With ALS: A Practical Guide

Energy conservation depends on the elimination of unnecessary steps in an activity. In ALS, muscle fatigue becomes a problem any time you make greater demands than your muscles can handle. By understanding the cause of your fatigue, and incorporating energy-conservation techniques into daily life, you’ll be able to live more independently and do more for yourself with less fatigue.

The following are tips for avoiding muscle fatigue, and modifying or streamlining simple tasks to conserve energy.

Principles of Energy Conservation

Avoid rushing.

• Preplan your work, and schedule rest periods.
• Spread heavy and light tasks throughout the day.
• Set priorities and eliminate unnecessary tasks.

• Sit instead of standing for any task that may last longer than 5 minutes.
• Avoid holding or lifting heavy objects by sliding or using a wheeled cart.
• Avoid reaching and bending by arranging your work area within normal reach.
• Apply for a “disabled” parking permit early in the disease process.

• Place supplies and equipment at the point of first use.
• Live simply, avoiding unnecessary cluttering of items.
• Use labor-saving equipment. For example, use a food processor for chopping or cutting.
• Use good posture to keep your trunk muscles in their best biomechanical position.

• Adjust work areas to a proper height.
• Use adequate ventilation.
• Use good lighting.
• Work in a relaxed manner, for example, with music.
• Wear comfortable clothing.

• Plan menus in advance.
• Use menus that require short preparation time and little effort, such as frozen or microwaveable foods and ready mixes.
• Plan preparation so that you can save trips around your kitchen and dining area.
• Sit at a table or counter of correct, comfortable height to mix ingredients, chop and slice vegetables, etc.
• After a meal, sit on a high stool at the sink when washing dishes.
• Open lower cupboard doors to allow more leg room at the sink or counter while sitting on a stool.
• Use a cutting board that fits over the sink.
• Avoid items that require constant stirring and attention.
• Use lightweight dishes, and double-handled pots and pans. Slide pots; don’t lift.
• To eliminate or reduce scrubbing pots and pans, use vegetable spray prior to cooking.
• Urge other family members to do their share of physical chores, or to do the most demanding ones.
• Look for special tools with built-up handles that make kitchen chores easier.

• For easier bed making, place the bed where both sides are open, not one against the wall. Make one trip only around the bed.
• Use a mop with a long handle to clean your bathtub.
• Use cleaning products that don’t require you to scrub.
• Get help, such as a service dog, a personal assistant or a housekeeper.
• Contact public service organizations in your community for help.

• Use technology designed to save computer keystrokes and mouse clicks.
• Investigate the possibility of telecommuting or completing your work from home.
• Discuss with your employer in advance the need to redefine your duties or put you in a position with fewer physical demands.
• Use a hands-free telephone with a headset or speaker system.
• For better grip on pencils or pens, wrap them in foam sponge or in multiple rubber bands. Other innovative grips can be found at office supply stores.
• Look for large-diameter pens or large, felt-tip pens.

• Gather all necessary items and place them within easy reach at waist level.
• Sit to undress, bathe, dry and dress.
• Use water of moderate (not too hot or too cold) temperature.
• To avoid excessive reaching, use a long-handled sponge to wash your back while sitting on a tub bench.
• To avoid bending from the waist, use the cross-leg method to wash and dry feet.

• Gather all items and place them within easy reach.
• Sit in a straight-backed chair to dress.
• Complete above-the-waist dressing first.
• Avoid reaching by choosing front-opening and/or loose-fitting garments. Fasten underclothes in front of the body.
• To avoid bending, use the cross-leg method to put on socks, underwear, trousers and shoes, in that order.
• Dress the weaker side first.
• Pull both underpants and trousers to your knees, then stand, pulling both to your waist, and fasten them.
• To avoid bending, gather all soiled clothes while seated.
• Use a grabbing device or reacher that allows you to pick up items such as shoes without having to bend over. Or store shoes on a raised shoe rack.

For more about Everyday Life With ALS: A Practical Guide, see "MDA Issues New Book On ALS."

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ECUs Can Help You Take Control at Home

by Tara Wood

Major life functions that diminish or disappear because of ALS are what make the disease so brutal.

But the loss of the ability to complete the simplest everyday tasks — changing the TV channel, turning on a light, adjusting a thermostat, making a phone call — can also create considerable frustration.

That’s where an environmental control unit (ECU) can make a difference.

An ECU is a high-tech device that enables people to operate various appliances in their homes, offices or other environments through one centralized controller.

These high-tech devices can restore or maintain variable levels of independence for people with ALS by providing a new way to control devices they can’t operate the standard way.

“An environmental control simply replaces the function of small electrical devices that you cannot control with normal hand access,” said Mary Lee Koyl of Tash Inc., a company that sells a variety of ECUs and other assistive equipment.

ECUs range from simple units that control one device, like a remote control for a television, to computer-based units that can control dozens of devices across multiple rooms.

Getting Technical

A variety of technology is used to make an ECU work, but the basics are this: “For every device we want to control, we need a transmitter and a receiver,” Koyl said, citing a television with a remote as an example.

The Imperium by Tash

ECUs employ a variety of transmission methods: ultrasound (sound waves that are nondirectional so the transmitter doesn’t have to be pointed at the device); infrared (low-powered and short-ranging signals that must be pointed at the device); and radio frequency or X-10 (low-wattage radio signals that can create a network through existing wiring in a house).

Some of the simplest ECUs rely on AC power, and consist of a box that plugs into a wall outlet while the device plugs into the box. Some of the most advanced ECUs use more than one type of transmission method and can control an entire home.

But most consumers really need to know whether an ECU unit will work for them, and how much it will cost.

Do a Home Inventory

Before you seek out dealers or manufacturers of ECUs, put some careful thought into how one can fit into your life.

“Before looking at the number of products that are on the market, create a list of all the devices you want to control in your home,” Koyl said.

Start from when you enter your front door, and go all around your house until you’d exit. Make a list for every room, and a list of items to be controlled by every device, she said.

You should even consider the specific functions within devices, for example, the power, channels and volume buttons for a television remote.

Next, decide how you’ll access the device, Koyl said.

Some choices of “access methods” include large keys, single or dual switches, the joystick or other controller on a power wheelchair, a communication device, or voice activation.

Keep in mind that your needs for access may change with ALS progression.

A television remote control is a simple example of an ECU.

For instance, ECUs made by SAJE Technology are all voice-activated, but come with a backup method to allow access by a switch, said Joel Tobeckson, vice president of Customer and Dealer Relations.

Many devices will work with specialized equipment such as hospital beds. Also, many augmentative, alternative communication (AAC) devices include a limited number of ECU features.

How Much Does It Cost

As with many high-tech devices, the more an ECU can do usually means the more it costs. Add-ons and other accessories can also enhance an ECU’s function and its price.

For example, the MiniRelax from Tash is a scanning infrared transmitter that controls the TV, VCR or any other device that operates using infrared. It will store up to six functions, and costs $250.

On the higher end of the price scale, the Imperium includes an integrated telephone, infrared and X-10 transmission, backup power for six hours and more. It costs $7,200 for a complete package through Tash.

In the middle, there’s the Powerhouse Roommate by SAJE Technology. It is a fully voice-activated telephone plus voice control over devices (both infrared and X-10) in a single room. It costs $2,500.

These three are a very small sample of what’s on the market.

Insurance coverage for an ECU device varies by state, but funding is often approved for Vocational Rehabilitation and VA clients, Tobeckson said.

Others in the assistive technology industry said that sometimes funding can be secured if a system includes a “nurse call” feature.

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MDA ALS Division - Research, Services, Information

The Muscular Dystrophy Association’s ALS Division helps people with Lou Gehrig’s disease through three avenues: research to uncover cures and better treatments; services, including medical care; and information needed to manage daily life with ALS.

This year, MDA is spending $15.5 million on its ALS program. For more than 50 years, MDA has led the world in ALS research and services, investing over $170 million.

RESEARCH

MDA’s ALS Division funds research worldwide seeking causes of, and treatments and cures for, ALS. MDA supports projects ranging from basic microbiological research on the causes of the disease to clinical trials of potential treatments. Information about participating in a clinical trial can be found at www.mda.org/research/ctrials.aspx or in “Research Roundup” in this newsmagazine.

MEDICAL CARE

A doctor who suspects someone has ALS can refer the person to a local MDA office to make an appointment at one of MDA’s 235 hospital-affiliated clinics or 34 designated MDA/ALS centers. There, experts will conduct a diagnostic examination. People who have ALS and who register with MDA can receive follow-up care by health care professionals, throughout the course of the disease.

OTHER SERVICES

Through its local offices, MDA offers support groups for those with ALS and their caregivers.

People with ALS can borrow devices to help with day-to-day living from MDA’s equipment loan closets. MDA also assists with the cost of wheelchairs, leg braces and communication devices, as well as wheelchair repair.

To find your nearest local MDA office, go to www.mda.org.

INFORMATION

MDA is the nation’s best source of news about ALS research developments. Its publications also provide thorough information on coping with medical, financial, practical, emotional and other challenges presented by the disease.

The starting point for this information is MDA’s ALS Web site, at www.als-mda.org, or your local MDA office.

To sign up for chats, go to www.mda.org/chat/calendar.html. You can also see transcripts of past chats.

PUBLICATIONS

Several ALS-specific publications are available at your local MDA office or from MDA National Headquarters. Many of these MDA publications also can be found on the MDA/ALS Web site.

ALS: Maintaining Nutrition: A 130-page book geared to physicians and covering swallowing, diet and alternative feeding methods. Prepared by the MDA/ALS Center at Baylor College of Medicine.

Everyday Life With ALS: A Practical Guide: A 150-page illustrated book, new this month, providing basic information on saving energy, home modification, respiratory and speech equipment, mobility equipment, exercise and more.

Facts About Amyotrophic Lateral Sclerosis: An introductory pamphlet for those with new diagnoses.

Los Hechos Acerca de la Esclerosis Lateral Amiotrófica: The Spanish translation of “Facts About ALS.”

MDA/ALS Newsmagazine: A monthly publication featuring news on ALS research, profiles of people with ALS, and insightful articles on health care and caregiving.

Meals for Easy Swallowing: A book of recipes and feeding tips. No longer in print, but available at www.als-mda.org/publications/meals.

Quest: MDA’s bimonthly national newsmagazine, reporting on many issues of living with neuromuscular diseases and helpful products.

When a Loved One Has ALS: A Caregiver’s Guide: A comprehensive manual filled with practical advice.

VIDEOS

Videos available from local MDA offices offer helpful guidance on setting up an ALS support group; ventilation options; and ALS research findings.

Breathe Easy: A Respiratory Guide for People Living With Neuromuscular Diseases:
This educational video explores options for assisted breathing devices and techniques.

Breath of Life:
This version of “Breathe Easy” is geared for use by physicians and other medical professionals.

Support Groups: The MDA Support Group and You; Your MDA/ALS Support Group: Getting Started; and ALS: Maintaining a Positive Perspective
For new and ongoing support groups

With Strength and Courage — Understanding and Living With ALS
This video provides an introduction to ALS by Dr. Stanley Appel, a leading ALS researcher and director of the MDA/ALS Center at the Methodist Hospital in Houston. It’s available on loan from your local MDA office.

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MDA Opens 34th ALS Center The MDA ALS Division announces the designation of the University of Massachusetts Medical Center in Worcester as site of its 34th MDA/ALS center. MDA/ALS centers focus on service and research and offer the latest therapies using a team approach for people with ALS. These centers also help people learn to better cope with the disease.   David Chad The director of the new center in Worcester is David Chad, professor of neurology and director of MDA’s outpatient clinic at the university. Chad has written extensively on ALS with his colleague Hiroshi Mitsumoto, codirector of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University Medical Center in New York. A complete list of MDA/ALS centers and contact information is also available at www.als-mda.org/clinics/alsserv.html.

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MDA/ALS Research Centers

There are 34 facilities at major medical institutions that have been designated MDA/ALS Research Centers, indicating that they’re focal points of MDA’s ALS program.

All of MDA’s 235 hospital-affiliated clinics across the country also serve people with ALS

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