Glutamate Transporters — an Untapped Resource?
by Margaret Wahl
Jeffrey Rothstein, MDA research grantee and director of MDA's ALS Center at Johns Hopkins University in Baltimore, has identified an antibiotic that could be effective against ALS by removing excess gultamate.
Rothstein says he has no problem calling ALS a “multifactorial disease.”
“There are many pathways involved,” Rothstein said in a recent telephone interview. “By the time a patient develops clinical disease, there’s activation of multiple toxic pathways.
“The inflammatory response is one of them, ongoing oxidative injury is another, mitochondrial dysfunction is potentially another, and the loss of glutamate transporters is another.
“There’s no one event that takes a primary role; they’re all contributing factors.”
Rothstein says there’s nothing wrong with the idea of attacking each of these pathways to ameliorate ALS symptoms, but one thing distresses him.
“The only proven drug in ALS is an antiglutamate drug, riluzole. Even though it’s not a very good drug, it’s the only drug that has worked in a clinical trial.
“With all these theories, we’re still left with only one drug that works, and it’s not the greatest drug. Every time we get a new pathway, we run after it with new drugs.
“What we’ve never done is say, ‘Riluzole worked; why don’t we build another drug in that pathway — perhaps one that’s more potent?’ We’ve never optimized the therapy for this pathway.”
The Antiglutamate Pathway
Rothstein considers the antiglutamate pathway an “untapped resource” in ALS treatment. Most of the drugs that have been tried, he says, have been based on the idea of blocking glutamate receptors, the places on target cells where glutamate “docks.” But for Rothstein, there are other ways to get rid of excess glutamate, a prime suspect in ALS causation and perpetuation.
Glutamate, also known as an excitatory amino acid, is a key transmitter of signals in the nervous system. It’s necessary for signals to travel from upper motor neurons (movement-related nerve cells) in the brain to lower motor neurons in the spinal cord that ultimately send signals to muscles.
But excessive glutamate is a cell poison; it has to be recycled quickly, before it builds up to toxic levels.
That’s where glutamate transporters come in. It’s their job to make sure that glutamate is whisked away from the cleft between nerve cells as soon as it’s finished doing its signaling job.
“No pharmaceutical company has successfully developed drugs that manipulate these transporters,” he says.
In ALS patients, Rothstein says, “glutamate transporters downregulate [decrease]. Why they downregulate is not known, but when they do, when they’re not there, you increase toxicity to neurons.
“If you want to take just that part of the equation, you can say, ‘Let’s offset that; let’s upregulate them, and offset that loss.’”
That’s a goal Rothstein and colleagues, with MDA support, have been working on for several years. But only recently have they found a drug that might do the job.
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| In the normal central nervous system, glutamate flows across a cleft from one nerve cell to another, is then quickly removed from the area by glutamate transporters, and then recycled. In ALS, there’s less glutamate transporter available, and glutamate builds up to toxic levels in the clefts between nerve cells. Rothstein’s group has found that ceftriaxone can increase the amount of glutamate transporter and might return glutamate concentrations around nerve cells to nearly normal levels. |
Antibiotic Might Work
With a grant from the National Institutes of Health’s Institute of Neurological Disorders and Stroke, they screened 1,040 drugs already approved by the U.S. Food and Drug Administration for their direct actions on cells in a lab dish, looking for the needle in a haystack that might increase production of at least one glutamate transporter.
Rothstein believes the needle has been found, in the form of ceftriaxone, a beta-lactam antibiotic. He’s already taken the next several steps.
First, after the positive “hit” on the cell screening, his group has given ceftriaxone to healthy mice and found it turned on the gene in their brains and actually led to more transporter protein. Then he gave the drug to mice with genetic ALS caused by a mutation in the SOD1 gene.
“It worked,” he says. Now, Rothstein’s group is planning a human trial of ceftriaxone in ALS.
“Most antibiotics don’t get into the brain,” Rothstein says, “so they’re of no value. Ceftriaxone does get into the brain, but has to be given intravenously to get effective levels.” No one knows how often the intravenous infusions will have to be given, he says.
Rothstein’s group, along with a national consortium, is planning
a 40-center clinical trial of ceftriaxone — “the biggest
trial we’ve ever done,” he says, noting its regulatory matters
remain to be settled.
But Rothstein is quick to add that ceftriaxone and other antibiotics of its type aren’t the final step for glutamate transport enhancement in ALS.
“The point is not to spend the rest of our lives working on antibiotics,” he says. “It’s more, ‘If this works, can we find nonantibiotic drugs that have the same activity?’
“The long-term goal of drug development is to find drugs that have the same biological action but not the antibiotic properties.”
Wings Over Wall Street Honors Three Leaders of the Fight
by Tara Wood
Wings Over Wall Street on Sept. 29 will be the fourth annual gala held in New York to raise funds to support MDA’s ALS research program. During the event, three people will be honored for their contributions to the effort to defeat ALS.
Andrew Knipe: Swinging With a Creative Bat
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Andrew Knipe |
As creative director and senior vice president of BBDO Worldwide, an advertising agency that boasts such clients as Federal Express and Pepsi, Andrew T. Knipe is used to designing campaigns that grab attention.
So when he learned in 2000 that he had ALS, Knipe, now 35, blended his artistic skills with his passion for the New York Yankees into a variety of projects to benefit ALS research.
For his tireless efforts, Knipe, of Oceanside, N.Y., will receive the Spirit Award at the MDA Wings Over Wall Street Gala.
He directed and produced six film tributes on notable sports figures for an ALS-benefit sports dinner, and teamed with other leaders in the ALS community on various events, many of them with Lou Gehrig or baseball themes.
Knipe has also stepped into the public spotlight, sharing details of his personal battle. He was featured on ABC’s “Good Morning America” and has told his story to congressional leaders.
Although his labors benefit all who are affected by ALS, Knipe said he, too, gets a boost.
“The hardest parts of ALS are visually and virtually obvious, but the fund-raising aspect and spreading the word to the masses is where you as a patient get to rise above the disease,” said Knipe, who uses a power wheelchair for mobility and has the use of a few fingers.
Knipe said he draws strength from his late friend Michael Beier, former Wings chairperson who died of ALS in 2003.
“I often feel Michael in times of great despair when my disease affects me the most,” Knipe said. “I feel him smiling and putting his arm around me saying, ‘Andy, you have a lot of work to do.’”
Knipe considers receiving the Spirit Award “an honor at the highest level,” adding, ”I’ve been fortunate, like Michael, that I have a career that allows me the chance to reach many people, both famous and Fortune 500 worthy.”
Knipe’s company provides him with a driver for his van to bring him to the office twice a week. On other days, he works from home or elsewhere, operating his computer with a Tracker One head mouse, an on-screen keyboard and three of his fingers.
“My company finds me the materials, the transport, the environment, the software, the love... to stay creative, to stay Andy Knipe no matter what,” Knipe said. “The love is mutual. The rest? Icing on the cake.”
He and his wife, Laura Culhane, have three children. Jessica, 16, is a “huge help to all of us,” and Joseph, 3, was born just as Knipe’s ALS was discovered. Earlier this year, along came Leo.
Stanley H. Appel, M.D.: A Committed Career
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Stanley Appel |
Noted neurologist Stan Appel will receive the Diamond Award, given to a scientific leader dedicated to the eradication of ALS.
Appel is a professor in the Neurology Department at Baylor College of Medicine in Houston, and is director of the Ronny & Linda Finger MDA/ALS Center and the Vicki Appel Neuromuscular Clinic (named for his late wife). The center, established in 1988, was one of the first of MDA’s 33 ALS centers.
Appel, an MDA clinic director since the 1970s, is a member of MDA’s Board of Directors and serves on the Association’s Medical Advisory Committee.
Appel is well-known in medical circles for his laboratory’s research which has provided valuable insight into degenerative neurological diseases with a primary emphasis on ALS.
Among his many awards and honors, Appel is the recipient of the Gold Medal Award in 1997 from Columbia University for Distinguished Achievements in Medicine. He’s authored 15 books and more than 300 articles on topics such as ALS and other neuromuscular diseases.
The Diamond award is named in honor of Wings gala founder Toni Diamond, who has battled ALS since 2000.
David Memmott: A Friend’s Legacy
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David Memmott |
David Memmott of Rumson, N.J., will be presented with the Michael P. Beier Award for motivating others to find a cure for ALS.
The award is named for the former Wings event chair, who died from ALS in 2003 at age 40. The honor is particularly meaningful to Memmott, as he and Beier were longtime friends. Beier was a NASDAQ trader.
Memmott has been personally involved with MDA’s fight to find a cure for ALS since 2001, when Beier received his devastating diagnosis.
Memmott joined the Wings Over Wall Street Committee in 2002, helping Beier spearhead the event to raise an impressive $1.9 million. Memmott, a managing director at Morgan Stanley, has since been elevated to the event’s Executive Committee.
Memmott is known for his limitless dedication and determination to find a cure for ALS. He and his wife, Debbie, have a baby daughter, Chapin.
Wheelchair Control Devices Keep You Driving
by Kathy Wechsler
There’s more than one way to drive a power wheelchair. If you have ALS, wheelchair control systems can mean the difference between going to your son’s Little League game and being trapped at home watching a baseball game on TV.
The Early Bird Gets the Mobility
If you’re in the early stages of the disease, probably the last thing you want to think about is the fact that ALS is progressive. Unfortunately, denial won’t keep it from happening. The best way to arm yourself against losing your mobility is to plan ahead.
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Jim Matzinger finds his sip-and-puff wheelchair control system has more advantages than drawbacks. |
If you’re currently using a power chair with a standard joystick, you should talk to your occupational therapist (OT), physical therapist (PT) and rehab technology specialist (RTS) about how fast your disease is progressing. These professionals can figure out if your chair can eventually be fitted with an alternative control device, and when that need may arise.
Most power chairs allow you to upgrade the control box’s electronics to install a more complicated system. The control box, a minicomputer located on the chair frame, can operate a variety of driving controls, from switches to minijoysticks.
Planning ahead allows the RTS to fill out paperwork to get the device funded through your insurance program, said RTS Mark Hamman of Apria Healthcare in Albuquerque, N.M. If you wait until it becomes difficult or unsafe to use a standard joystick, you might be stuck with no independent means of mobility for a while.
Starting Your Search
At the MDA/ALS Center at the University of New Mexico Health Sciences Center, Hamman helps people with ALS find the wheelchair control system that’s right for them. This takes a lot of teamwork.
“We try to coordinate the PT, the OT and myself, all together,” said Hamman, a member of the National Registry for Rehab Technology Suppliers for eight years. “I think that’s one of the most effective ways to make sure that we have an extra set of eyes, everybody working together and addressing all the needs of the patient.”
It’s always a good idea to do your own consumer research.
Who made your chair? Go to the manufacturer’s Web site and learn about the control systems available for your specific model. Then, with the rehab team’s help, you can rule out the ones that won’t work for you.
The right control system depends on your capabilities and limitations. Whatever your level of movement, the RTS can put together a system to fit your needs.
For example, are your lungs strong enough to operate a sip-and-puff device? Do you have enough neck strength to use a head array device, which has switches and sensors in the chair’s headrest?
Three Happy Customers
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Jack Higle drives his chair by moving his head. |
Jack Higle of Fort Wayne, Ind., uses a head array device from Adaptive Switch Laboratories, (ASL) to operate his Pride power wheelchair. Moving his head forward and back, or left and right, turns the directional switches on and off.
Higle, 59, who’s had ALS for two years, loves the independence ASL allows him and recommends the device to others. His chair, with the control system, was covered by the Veterans Administration.
Rama Whitlock of Glen Alpine, N.C., has found another approach, “The Magitek Drive System has given me a freedom I’ve not known for 25 years. Without this system I’d still be stuck in my recliner watching the world go by,” she said.
Now 54, Whitlock began noticing symptoms of ALS at age 27. In 2002, she acquired a Permobil power wheelchair with a Magitek Human Interface control system.
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Rama Whitlock uses sensors on her head and one foot for steering her chair. |
Whitlock has one thumbnail-size sensor on top of her left foot and, with a rocking motion, her foot tells the chair to go forward or reverse. Another sensor on top of her head lets her steer her chair by tilting her head to the left or right. A Micro Light switch from Tash allows her to turn the system on and off with a finger.
Found to have ALS in 1998, Jim Matzinger of Cobb, Calif., operates his Permobil Chairman 2K with a sip-and-puff device made by Penny & Giles. He enjoys the independence this method offers, but realizes it may not work for him if the muscles that operate his lungs become weaker.
A strong puff makes the wheelchair go forward, and a strong sip puts it in reverse. Turning right or left is controlled by a soft puff or a soft sip. Matzinger, 54, can also control the speed as well as tilt and recline options with the sip-and-puff.
The system has some disadvantages, Matzinger said. He doesn’t have as much control over the wheelchair as he’d like, and it has trouble differentiating between a right turn (soft puff) and an increase in speed (the chair goes faster the harder you puff). As you can imagine, this confusion can cause quite a few damaged doorways.
“Unless I’m really careful, I get into the strong puff when I don’t want to,” said Matzinger, a retired teacher. “It’s awkward sometimes, but at the same time, it really helps me a lot to have the system.”
The health care service coordinator at your local MDA office can set you up with knowledgeable experts who’ll help find a wheelchair control device to fit your needs.
New York Center Supplies Answers, Hope
Famed Photographer & Family Face ALS
by Alyssa Adams
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Alyssa Adams |
Until this year, I had no idea what it meant to have ALS. It didn’t relate to me, I didn’t know anyone who had it — it was nowhere on my daily radar.
We began to notice changes in my husband’s health last fall, and our doctor thought he’d had a ministroke. His speech was slurred, he had fallen several times and he had a horrible pain in his neck.
Not satisfied with the diagnosis from one doctor, I needed a second opinion. But first, I did what I normally do when I need to find something out: I searched online. By January, based on what I found when searching for his symptoms, I’d started to suspect Eddie had some type of neurological muscular disorder.
We went to see a neurologist on St. Patrick’s Day; New York City was in the middle of a spring snowstorm. I sat in the coffee shop around the corner from the neurologist’s office watching the snow fall while Eddie was having an EMG performed.
After the hour-long procedure, the doctor confirmed our suspicions and diagnosed Eddie’s change in health as ALS.
The Search
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Eddie
Adams’ 1977 series “The Boat of No Smiles”
(including the photograph above) was credited with influencing
the U.S. government’s decision to allow Vietnamese refugees
into the United States. |
Our path from that point was to obtain as much information as possible. Back to Google, back to the neurologist, then to a pulmonologist, then a physical therapist, a speech therapist and an occupational therapist.
All of these experts gave us bits and pieces of information about ALS, but none of them could give us the overall picture. It was very frustrating to be talking to doctors with limited exposure to the disease. What I’d read on the Internet was devastating, and we needed information.
Eddie didn’t want to tell his family or friends about the disease. It was a very lonely time for me, not being able to talk about it.
I was worried about everything that people worry about in this situation. How would I take care of Eddie? How would I keep my job? How does this disease unfold? How will I know what to do?
How will this affect our son? Will my insurance be enough? Will we become destitute? Will I be strong enough to support Eddie through this? Will I be physically strong enough to even move him? Will we be able to plan for the future?
All the questions that people lose sleep over were the questions that plagued me day and night.
The Source
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Adams cites his photo of Louis Armstrong, taken after the great trumpeter had been ill, as one of his favorites |
We finally found our way to the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University Medical Center in New York, directed by Hiroshi Mitsumuto. He confirmed, that, yes, Eddie did indeed have ALS, and, no, there was no cure.
But he assured us he could answer any questions we had, and he had a team of doctors and therapists who were specifically trained to deal with this disease.
He then said something that made me want to jump up and hug him. He said this disease isn’t just the disease of the individual with the illness, but a disease that the whole family shares.
I realized then that this was the expert who understood all my fears and that I wasn’t alone. The relief that washed over me was immeasurable.
Over the next couple of months we met with Dr. Mitsumuto and worked with the MDA rep and the support team of therapists. Their suggestions were very valuable and they helped us anticipate the progression and direction of the disease in order to plan properly.
It was such a relief to be able to go to one place and see a team of people. All of them knew us and each other, and they knew exactly how to deal with situations specific to ALS.
Gratitude
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Parade Chairman & CEO Walter Anderson, an MDA national vice president (left), reviews some of Adams’ famous photos with the photographer. Adams uses an electronic communication device because of ALS. |
Speaking with Maura del Bene, the nurse practitioner who’s managed the center for several years, I told her how thankful I was to have benefited from the clinic’s resources. I wondered aloud how people were able to cope before the existence of these MDA/ALS centers.
My heart goes out to all the families who years ago struggled alone with limited resources ... and to those struggling now who live in remote areas without nearby resources.
My husband is so brave. I’m so proud of his life, his accomplishments, and how he’s managing to live with ALS and the knowledge that his time here is now measured.
I would never wish this disease on anyone. I pray for all those who live with ALS and I wish for all of them to be able to find the resources available through MDA.
I want to thank MDA, Dr. Mitsumuto, his team, Eleanor Gehrig and all those who have come before who have helped make this inhumane disease more humane and manageable for the caregivers of people with ALS.
Alyssa Adams of New York is a photo editor at TV Guide Magazine. She and Eddie Adams have been married for 15 years and have a son, August.
Adams a Longtime MDA Friend
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Adams’ powerful portrait of Jerry Lewis was published on the cover of Parade in April 1984. |
BULLETIN
As this issue went to press, MDA learned that Eddie Adams died at his home Sept. 19 as a result of ALS. He was 71.
Eddie Adams, winner of a 1969 Pulitzer Prize and recipient of more than 500 other international, national and local awards, is one of the country’s most published photographers.
Adams, 71, has photographed leaders in all fields, from politics to film, sports and high fashion. His portfolio includes sessions with seven U.S. presidents and 65 other heads of state.
Adams’ photographs regularly grace the covers and front pages of the world’s most prestigious and best read magazines and newspapers, including Time, Newsweek, Life, Paris Match, Parade, Vogue, The London Sunday Times Magazine, The New York Times, Der Stern and Vanity Fair.
Adams has photographed the ravages of 13 wars, his last in Kuwait in 1991. In Vietnam, he accompanied American and Vietnamese troops in 150 operations. In 1968, Adams captured the indelible image of a Vietnamese general executing a Viet Cong member at point-blank range. The image earned the photographer the Pulitzer Prize.
Adams has long played an important part in conveying MDA’s message to the public. As a Parade special correspondent for some 20 years, he’s taken many of the photos for the Sunday supplement’s Telethon coverage on Labor Day weekend.
During the 2004 Telethon, Parade CEO Walter Anderson, an MDA national vice president, introduced a profile of Adams and his family and their life with ALS.
ALS RESEARCH ROUNDUP
Xaliproden Fails in ALS, But Hope Remains
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Benjamin Brooks |
The experimental drug xaliproden has failed to fulfill the promise that earlier trials had hinted at, according to a report in the June issue of Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders.
The drug was developed by the multinational pharmaceutical company Sanofi-Synthelabo and tested in two large-scale multicenter trials in North America and Europe. It’s thought to increase the body’s production of its own neurotrophic (nerve-nourishing) substances.
At this time, Sanofi-Synthelabo is unlikely to pursue approval for the drug for ALS from regulatory agencies in the United States, according to Benjamin Brooks, director of the MDA/ALS Center at the University of Wisconsin-Madison and an investigator on this study.
In one study, in which participants took either a placebo (inert substance) or xaliproden, the group that got the higher dose of xaliproden lost respiratory function significantly more slowly.
In the other study, participants took riluzole with xaliproden. The group that took the lower dose of xaliproden with riluzole also lost respiratory capacity significantly more slowly.
However, trial participants who took xaliproden didn’t survive any longer than those given a placebo.
In a recent interview, Brooks said he and other investigators noted that xaliproden seemed to have an “alerting” effect that was detected in some of the psychological tests conducted during the study. It may also have had a positive effect on strength in the biceps, he said.
Presumably because of the alerting effect, Sanofi-Synthelabo has decided to test the drug in Alzheimer’s disease, in which patients lose cognitive abilities. Brooks speculates that if the drug shows benefit in that condition, the company may take a second look at it for ALS.
Some ALS patients may have a specific, as-yet-undefined genetic makeup that allows them to respond to xaliproden, he said.
CoQ10 Still on Trial
According to the summer issue of a newsletter published by the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York, coenzyme Q10 has shown itself to be safe for ALS patients in a small, pilot trial.
The trial, in which 20 people with ALS received either coQ10 or a placebo, showed that the medication was well tolerated in general, although some participants experienced stomach upset or other gastrointestinal symptoms. The pilot trial wasn’t designed to show effectiveness.
CoQ10 is thought to improve the activity of the mitochondria, the energy “factories” inside cells, and also to combat damage from free radicals, toxic compounds produced by cellular metabolism. It’s been shown to be beneficial in mice with genetic ALS and in people with Parkinson’s disease.
The newsletter notes that Petra Kaufmann, assistant professor of neurology at Columbia, has received a grant from the National Institutes of Health to conduct a multicenter trial of coQ10 in ALS.
Partners Cope When Speech Is Lost
Loss of the usual methods of communication is among the most devastating effects of ALS. But a study conducted over three years by Joan Murphy in the Department of Psychology at the University of Stirling in Scotland has shown that, at least between the person with ALS and a spouse, close friend or close relative (“communication partner”), communication is fairly well preserved despite the disease.
Fifteen people with ALS were involved in the study, for which results are reported in the June issue of ALS and Other Motor Neuron Disorders.
The study showed that the most important purpose of communication between the participant and his or her partner wasn’t to indicate needs or wants or to transfer information, but rather to develop and maintain social closeness. Their strategies for doing so varied among individuals and according to the stage of the disease.
For people in the early stages of ALS, simply repeating what had been said was usually enough to improve intelligibility. Some people also spelled or stressed key words as a help to the partner. Two people said breathing more deeply helped their speech, and some noted that they had to pace themselves and take rests before a period of talking.
Several partners used “topic cues” and context to understand their loved ones’ speech. Gestures, facial expressions and eye contact helped considerably.
Murphy concluded that communication “is a collaborative effort, and therapy needs to be provided with that in mind, not concentrating solely on the speech of the person with ALS.” She found “very few real communication breakdowns, as partners worked together to resolve any misunderstandings.”
Harvard Doctors Study Noninvasive EMG
The EMG, or electromyogram, remains a mainstay of diagnosis in ALS and other neuromuscular disorders. But the technique, which uses needle electrodes to measure electricity-like signals coming from inside muscles, is painful and distressing.
Now, doctors at Beth Israel Deaconess Medical Center in Boston (affiliated with Harvard University) are developing a new technique called electrical impedance myography, or EIM, which they say provides information similar to that gleaned from an EMG, without being as painful or invasive. The study is supported by the National Institutes of Health and the Harvard Center for Neurodegeneration and Repair.
The researchers are seeking adults who have ALS or any nerve or muscle disorder that causes weakness and who meet other study criteria. Participants must make periodic visits to Boston, and some financial compensation is offered.
For more information, contact physicians Seward Rutkove or Gregory Esper at (617) 667-3083 or eimstudy@bidmc.harvard.edu.
Artist With ALS Receives Award
by D.J. Rodriguez
Erin Brady Worsham of Nashville, Tenn., has accomplished a lot during her lifetime, much of it since receiving a diagnosis of ALS in 1994.
The loving wife and mother has since lost the ability to use her hands. But that hasn’t stopped her from creating art — with a computer.
Using a modified Liberator augmentative communication device made by Prentke Romich, Worsham, 46, creates a variety of art pieces, and has two in the MDA Art Collection.
Her one-woman show, Artist Always, is traveling
to several U.S. and Canadian cities through
February. And this year, she learned that
she was selected as the 2004 Spirit of da
Vinci Award winner.
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Erin Worsham’s “Breathtaking Metamorphosis” is part of the MDA Art Collection. It depicts her newfound freedom as a result of using a ventilator for breathing assistance. |
Sponsored by the Engineering Society of Detroit and the National Multiple Sclerosis Society, Michigan chapter, the Spirit of da Vinci Award “recognizes an individual who exemplifies the creative spirit of Leonardo da Vinci in their use of assistive technology.”
Worsham’s Liberator controls her computer with a sensor taped to her forehead, enabling her to create her work one “hit” at a time by moving an eyebrow.
Worsham frequently illustrates articles in MDA’s Quest magazine and has written several pieces for the magazine as well.
In a June 2001 Quest article, Worsham wrote: “My ventilator and feeding tube keep me going, and my Liberator communication device interfacing with our computer allows me to speak, write and draw.
“I was an artist before I became sick. After the diagnosis, I lost the heart to create. When I found it again, I’d lost the muscle! With the Liberator, I can create again.”
She’ll be presented with the award on Oct. 29 in Dearborn, Mich.
Congress Leaves Legislation Undecided
As members of Congress wrap up their 108th session and head for home, they leave dangling several bills of interest to people coping with ALS and other long-term disabilities. These bills may be handled in a post-election session, or by the 109th Congress next year:
Lifespan Respite Care Act of 2003 (H.R. 1083; S. 538)
This bill authorizes federal grants to states to support, expand and streamline respite care services for caregivers.
The bill passed the Senate but is pending in the House. Recently, the full text of the bill was incorporated into the Ronald Reagan Alzheimer’s Breakthrough Act (H.R. 4595; S. 2533).
Improving Access to Assistive Technology for Individuals with Disabilities Act (H.R. 4278; S. 2595)
This is the third reauthorization of the landmark 1988 Tech Act, which helps people with disabilities obtain and use assistive technology such as computers and communication devices.
The reauthorization bill supports existing programs and expands direct assistance through such things as device loan and alternative financing programs. The House unanimously passed the bill; the Senate hasn’t voted.
However, neither President Bush’s proposed 2005 budget nor a House Appropriations Committee appropriations bill includes any funds for basic Tech Act programs.
Transportation Equity Act: A Legacy for Users (H.R. 3550; S. 1072)
This bill deals with a variety of transportation programs, including accessible public transportation and the accessibility of sidewalks, crosswalks and other public rights of way. Although both the House and Senate passed their own versions in early 2004, no committee has been appointed to hash out the differences between the bills and move it toward passage.
MiCASSA (Medicaid Community-based Attendant Services and
Supports Act; H.R. 2032; S. 971)
This bill amends Medicaid to allow “money to follow the person” and keep people out of institutions. Eligible individuals could choose to spend their Medicaid allotment at a nursing home, or to access community-based supports.
To find out how to contact your U.S. congressional delegation, and express your views on these bills, check the telephone book or go to www.house.gov or www.senate.gov. To check on the status of a bill, visit the online service of the Library of Congress, at http://thomas.loc.gov.
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