KEEP TALKING WITH TECHNOLOGY — What You Need to Know About
AAC Devices
by Tara Wood
Jackie Boswell, a professor emeritus of music
at Arizona State University, in Tempe, who has ALS, uses the
Handheld Portable Impact by Enkidu to communicate.
Photo courtesy of Enkidu Research
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People with ALS quickly become familiar with a wide world of durable
medical equipment that can range from walkers and wheelchairs to ventilation
equipment.
Within this equipment array are devices for augmentative, alternative
communication (AAC): equipment that can enable people to communicate
if they’re unable to speak.
Those knowledgeable about the disease agree that AAC devices can help
keep a person with ALS connected with their loved ones and able to maintain
a higher quality of life.
That’s why MDA has established a policy to pay up to $2,000
for the one-time purchase of such a device. MDA’s policy follows
Medicare’s 2001 decision to cover equipment that generates speech.
Some private insurers also cover AAC devices.
To help you decide which devices might best suit your needs, The MDA/ALS
Newsletter presents this primer on today’s AAC choices.
Don’t Go It Alone
The AAC concept includes any means of communication beyond speaking,
and AAC equipment is available in a wide range of products, employing
an even wider range of technology.
Low-tech AAC can be as simple as gesturing or pointing to an alphabet
board. For those with ALS, high-tech devices are usually in order, said
Jeff Edmiaston, a speech-language pathologist at Barnes Jewish Hospital
in St. Louis.
Today’s AAC devices include dedicated machines
designed solely for generating speech, and software programs for personal computers. The devices are created to be user-friendly
(easy to learn and use), and their technology is increasingly innovative.
Health experts and device manufacturers encourage consumers —
especially those with ALS — to consult with a team of
experts before they buy an AAC device.
For example, where Edmiaston works, a person with ALS will team up
with a speech-language pathologist, an occupational
therapist and a physical therapist. Together
they’ll try out many devices, decide what AAC equipment is most
appropriate for the individual, and determine how he or she can continue
to use it as the disease progresses.
A qualified AAC team should also be able to help get you successfully
through the Medicare and/or private insurance reimbursement process,
Edmiaston said.
A patient should “ask if the person who does the evaluation understands
the Medicare guidelines, and knows what goes in a report,” he
said.
It’s a time-consuming process that can take up to three months
to complete, he said.
Consumers may experience an unpleasant “sticker shock”
when they begin researching AAC devices. The high-tech machines can
cost thousands of dollars.
But hang in there, Edmiaston advised, and make your communication needs
your priority, because “there’s always a way” to find
funding.
“The thing I always say is ‘we’ll talk about cost
at the very end.’ Cost should never be an issue,” Edmiaston
said. “If you go for what’s the cheapest, then what happens
is you will have to get a new device down the road [as your needs change].”
Patients and therapists should be asking, “Will this device meet
my needs now, and will it meet my needs six months from now?”
Edmiaston added that people with ALS should begin looking at AAC choices
when they first begin experiencing symptoms.
What They Can Do
While there’s a growing number of AAC devices on the market,
each follows the same basic idea: The user inputs information about
what to say, and the machine “speaks” it.
The devices differ in the actual design of the machine, size and system
features. Most are generally the size of a laptop computer or smaller,
with handheld or palmtop devices a recent innovation.
Some brands feature standard keyboards or rows of
buttons for inputting information,
The Miracle Mouse from Maui Innovative Peripherals
uses head motion to run a computer.
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while other “tablet” styles have touch screens,
in which the user simply touches the screen to activate a function.
Mice and trackballs are also input devices.
Most AAC systems use some form of encoding, a process
of creating codes, abbreviations or labels to represent a letter, item
or message.
For example, typing “HH” might stand for “Hello,
how are you?” on one machine. Another machine might be programmed
so that touching one button will generate the same greeting, Edmiaston
said.
Devices also differ in whether they’re symbol-based,
in which the user selects from categories of symbols and pictures to
form a sentence, or text-based, in which the user inputs
text, codes or abbreviations that are converted into speech. In text-to-speech machines, you can type a sentence and the computer “speaks
it.”
Most popular brands include some level of word prediction,
a keystroke-saving feature. Based on one or two letters, the system
tries to guess the rest of the word the user is typing, and offers a
list of letters that would go with letters already entered.
More sophisticated word prediction features can be programmed to learn
words the user enters most frequently. In fact, the latest technology
can guess the user’s next word with remarkable accuracy, Edmiaston
said.
New technology in AAC has also led to machines that can dial a phone
and speak for you, and environmental control — the ability to
control household devices such as television sets and other electronics.
Scanning and Switches
As a user’s physical ability changes, so must the input method
for using the machine. That’s where switches come in.
Say a person with ALS can no longer type on a keyboard or click a mouse.
The person might still be able to use a switch to perform the same functions.
Examples of switch use would be tapping a button or moving a joystick
to activate a function.
Switches, too, feature a wide range of technology, from simple plug-in buttons to eyegaze systems that track
eye movement to activate a selection.
Head mice are another type of switch. Most involve
the user wearing a shiny dot sticker on the forehead and a special camera
that tracks the dot and controls the computer according to the user’s
head movement.
With switches may come scanning — a method of
selecting items in a communication system. Scanning programs highlight
rows or sections of choices on a screen in sequence, and the user activates
the switch when the correct choice is highlighted.
For example, if you needed to type an “h,” the device would
present an onscreen letter board and highlight the rows of letters in
sequence. When the row with “h” is highlighted, you’d
select it with your input device (a mouse click, switch, etc.). Then
each letter in the row would be highlighted in sequence, and when it
came to “h,” you’d select it.
Most AAC devices and personal computers on the market can be adapted
with a progression of switches, and most offer scanning ability.
The Future Is Here
Computer software — programs that can turn a
personal computer into a speech generator — is another AAC option.
Most work with Windows operating systems, although some are Macintosh-compatible.
Most people install the programs on laptop computers for added portability.
Futuristic switches and features such as input devices activated by
brain waves aren’t dreams for the future — they’re
available today. (See “Speaking (With) Your Mind”.)
It’s also possible to continue communicating in your own voice
through an AAC device, an approach that takes foresight and planning,
Edmiaston said.
People who are experiencing progressive loss of speaking ability can
“bank” digital recordings of their voices while they can
still speak, and the recordings can then be downloaded on to AAC devices.
Anyone interested in this possibility should ask a speech-language pathologist
for more information, he said.
Information sources for this article: CINI.org;
Wright State University Rehabilitation Engineering Web site (www.cs.wright.edu/bhe/rehabengr/rehabeng.html);
Communication Aid Manufacturers Association.
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 AAC Resources
For more information about MDA’s policy to assist with payment
for AAC devices, contact your local MDA office or clinic.
MDA clinics and MDA/ALS centers can provide referrals to speech-language
pathologists, or contact the American Speech-Language-Hearing
Association at (800) 638-8255. ASHA’s
Web site is www.asha.org.
For information about devices on the market and links to manufacturers’
Web sites, visit the Communication Aid Manufacturers Association at www.aacproducts.org.
Read about the role of speech therapists in ALS in "When
Mouth and Throat Muscles Weaken," MDA/ALS Newsletter February
2001.
Follow this newsletter and MDA’s Quest magazine for AAC articles
and ads.
NOTE: Medicare won’t reimburse for the purchase of AAC devices
that also feature functions like e-mail, Internet access or word processing.
Many AAC manufacturers whose machines include these capabilities now
also sell “dedicated” versions that prevent users from accessing
anything but communication functions.
Unfortunately, the price for a dedicated model is considerably higher.
Ask manufacturers and therapists about unlocking these features after
you’ve paid for a device.
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Speaking (With) Your
Mind
by Dan Stimson
You may have heard reports of “mind-reading”
devices that allow the user to control a computer or a prosthetic limb
simply by thinking about it.
This kind of technology — which uses electrodes to transmit signals
directly from the brain to a computer — enabled a monkey to send
its thoughts over the Internet and flex a robotic arm 600 miles away.
Another monkey used it to play a video game by moving a joystick, even
though the joystick had been disconnected from the computer.
Ready for Prime Time?
For people completely paralyzed by ALS, these so-called brain-computer
interfaces (BCIs) could restore at least some ability to communicate.
But are they ready for human use?
Believe it or not, at least two companies — Brain Actuated Technologies
(BAT) and Technos America — make devices that record brain signals
and slight facial twitches, and translate them into cursor movements,
mouse clicks and keystrokes. BAT’s Web site (www.brainfingers.com)
boasts testimonials from several people with ALS who’ve used BAT’s
device, called Cyberlink.
BCIs that provide an exclusive connection between mind and machine
are still in the early stages of development, but people with ALS can
get access to these devices by participating in research.
Testing
The MDA/ALS Center of Hope at Drexel University in Philadelphia is
testing the BCI 2000, which uses surface electrodes attached to the
scalp to record the combined activity of millions of brain cells, a
technique called electro-encephalography (EEG). Center
Director Terry Heiman-Patterson hopes to teach 20 people with ALS to
move a cursor with their thoughts, and is still recruiting participants.
Meanwhile, the Atlanta-based company Neural Signals is testing the
Brain Communicator
Researchers envision portable, wireless BCIs
that would allow a paralyzed user to communicate, steer a
wheelchair and control other household appliances.
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, a surgically implanted device that contains wirelike electrodes,
each of which records the “firing” of individual brain cells.
Several people paralyzed by disease or injury have volunteered for the
surgery, including a man who was rendered mute by a stroke but could
hold short conversations after using the device for a year.
It’s easy to be swept away by the science-fiction quality of
BCIs, but like all great inventions, they have some technical problems
that need solving before they’re made available on a large scale.
For example, someone using the BCI 2000 for word processing might be
able to produce two words per minute at most, says its inventor John
Wolpaw, a neuroscientist at the Wadsworth Center in Albany, N.Y. And
contrary to the mind-reading analogy, BCIs don’t simply read the
thoughts of a passive user; generating brainsignals that will simulate
the press of a computer key or a mouse button requires training, skill
and expert guidance.
“We’re trying to go out into the field and get BCIs to
operate in people’s homes, but their use is still largely dependent
on researchers who have the right technical knowledge,” Wolpaw
says. So, until BCIs become more user-friendly, volunteering for a study
may be the best way to try one.
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Depression in ALS: Looking
at the Evidence
To Greg Carter, M.D.:
I was diagnosed with ALS on April 18, 2001. I recently had to leave
my full-time teaching position because I am not able to give 100 percent
to my students anymore. I am happy volunteering at the high school,
speaking to students and keeping as active as my body allows.
A comment you made in the article in “Getting
Aggressive About Care” (October) offended me: “If one
doesn’t experience some level of depression, then one hasn’t
really accepted the diagnosis,” and “depression is expected
in a diagnosis of ALS.”
I respectfully disagree.
When I was diagnosed, I saw it coming. I continue to live my life and
don’t spend my days unhappy or dwelling on death. Like Professor
Morrie Schwartz, a man with ALS who was the inspiration for Mitch Albom’s
1997 book Tuesdays With Morrie, I have accepted
that death is on the horizon, but we all start dying the day we are
born. Everyone handles what life hands them differently.
Spending time in productive activities, around laughing children and
energetic teen-agers, and savoring each moment we have in this life
is the prescription you should be giving.
If I have a bad day does that make me depressed? No. Instead of prescribing
antidepressant drugs, prescribe the Comedy Channel or Jerry Lewis movies
or a good joke.
Being depressed is not a result of an ALS diagnosis. It is a state
of mind. It is attitude.
Ray Dionne
Newport, Maine
Dear Ray:
Indeed it is quite possible to have ALS, accept the diagnosis and not
be depressed.
However, my expressed opinion is based on data our research group at
the University of Washington and the University of California, Davis,
have collected over the past five years in our ongoing studies of quality
of life in ALS and other neuromuscular disorders.
Our data, which are consistent with other published studies, show high
levels of sadness and emotional distress on standardized quality-of-life
measurement tools in ALS patients. Other published studies have shown
that ALS has substantial adverse effects upon both the functioning and
well-being of patients and caregivers, and an association between the
emotional health status and the physical health status of patients and
caregivers.
In America, nobody wants to admit to depression because it is seen
as a sign of weakness. I am glad you have accepted your diagnosis and
are not depressed. However, the personal experience of an individual,
such as yourself, is known as “anecdotal evidence,” and
is not considered valid in medical research.
Unfortunately, this kind of anecdote may also propagate the misconception
that ALS is not associated with sadness or depression, which valid research
data would show isn’t true. This further compounds the problem
that physicians may not address depression or sadness in the treatment
of ALS and thus may not provide medication or make appropriate referrals
to counselors and other mental health professionals or support groups
that could ultimately lead to treatment and improved quality of life.
That is the goal of my research: to improve the quality of life for
people with ALS.
Greg Carter, M.D.Co-Director, MDA/ALS Center
University of Washington, Seattle
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Vermont Doctor Prescribes
Hope
by Bill Greenberg
Thomas French was 14 years old when he decided
that his life’s ambition was to be a plastic surgeon.
“My plan was to practice surgery until age 65 or 70, followed
by 20-plus years of fun,” he recalls. “Sometime around age
90, after a day of golf, cocktails and dinner — and several hours
of vigorous lovemaking — I would die peacefully in my sleep.”
During his third year of practice, French began to experience weakness
in his left thumb. In January 1996, at age 34, he received a diagnosis
of ALS.
Love Conquers All
French first met his wife, Jacqueline, when they were in high school.
They were married in July 1983. Following a 1992 move to Virginia, their
marriage ended in divorce.
“We lived separate lives but were best friends,” French
remembers.
“Jacquie was the first person I called after learning the possible
diagnosis [of ALS]. She reacted by showing up at my door within the
hour and told me she would be by my side through thick and thin.”
Nine months later, the couple left Virginia to live closer to family
near Barnard, Vt. The following spring, Thomas and Jacqueline French
were remarried.
’Mind Games’
Lauren French, 4, gives her father, Tom, a
new focus in life. The Frenches say Lauren is especially good
at reading her father’s facial expressions.
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“Having been trained in traditional science-based medicine, I
saw things as either black or white,” French says about his ALS
diagnosis.
“My options were straightforward: 1. Go with the disease until
it kills me. 2. Live with the disease and use any or all life-sustaining
measures. Or, 3. Exit this life on my terms — the decision of
where, when and how would be mine.”
As a physician, French was well aware of what his future held.
“I could never imagine myself living with severe disabilities
and eventually ending up on life support,” he explains. “My
original plan was to let nature take its course. I wanted it to be known
that I was not to be resuscitated if I crashed (DNR).”
Last year, Robert C. Horn III, a former professor of political science
who has ALS and is the author of How Will They Know if I’m
Dead? — Transcending Disability and Terminal Illness,
released his latest book, Who’s Right/Whose Right?
— Seeking Answers and Dignity in the Debate Over the Right to
Die (DC Press). It includes a chapter by French called
“Mind Games.”
“ALS is the ultimate mind game,” French writes. “I
told ‘the beast’ that although it had wreaked havoc on me
physically, in no uncertain terms would it ever conquer my mind.”
New Decision
In August 1998, French’s worst fears became reality with his
first ALS-related visit to the emergency room. Doctors confirmed that
failing muscles had severely compromised his ability to breathe and
swallow. Without medical intervention, he would die.
But something had happened to change French’s earlier decision
to let the disease take his course. Just 10 days before his hospitalization,
his daughter, Lauren, was born.
“Lauren came along and ended up causing him to want to live,”
Jacquie remembers. “Those little girls — what they do to
you,” she adds with a chuckle.
“For the first time, I was thinking about the good things in
my life,” Tom agrees. “I changed my mind about the DNR status
— not because of a fear of death but because I wanted more out
of life.”
Less than a week later, French went on both a ventilator and a feeding
tube.
New Career
“ALS is a very expensive disease, especially if you receive your
care at home as I do,”
French asserts. “Where is all that money going to come from? I don’t
know.”
One way the Frenches found to help manage the costs of Tom’s
care was to buy his medicines in Canada.
“These drugs are identical to those sold in the United States,
but for half the cost.”
Thus, the idea for Two Flags Rx was born. Tom serves as chairman, with
Jacquie as president.
“We wanted to be able to still carry on with life and be able
to help other people at the same time, so Tom came up with this idea,”
Jacquie explains.
In partnership with LePharmacy Inc. of Montreal, Two Flags Rx can help
Americans save money on prescription drugs as a result of Canadian government-imposed
price limits and the stronger buying power of the U.S. dollar. (For
more information, call toll-free
1-888-453-6275 or
go to www.twoflagsrx.com.)
Keeping Hope Alive
“They say that ‘no hope is better than false hope,’
and I couldn’t disagree more,” says French, now 41.
“I wonder if we would see any changes in the progression of ALS
if patients were told they have an 80 percent chance of living more
than five years with minimal to moderate disability — a kind of
psychological placebo.
“It would be in stark contrast to ‘bang-bang, in three
to five years you’re dead,’” he adds.
Having decided to live his life to the fullest, French is implementing
that decision with the same determination that got him through medical
school.
“It took me a while to reach this point where I can calmly say,
I die when I die,” he explains. “But despite my limitations,
to Jacquie and Lauren I am a husband and father first, and a person
with ALS last.”
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ALS Research Roundup
Large Minocycline Trial Opens at 21 Centers
N
eurologist Paul Gordon, director of the MDA/ALS Center at the University
of New Mexico Health Sciences Center in Albuquerque, and Robert Miller,
director of the Forbes Norris MDA/ALS Research Center at California
Pacific Medical Center in San Francisco, have received funding to test
the drug minocycline in a greatly expanded trial that will include 400
participants with ALS at 21 centers in the United States and Canada.
Funding is from MDA and the National Institutes of Health in Bethesda,
Md.
The centers are located in Arizona, California, the District of Columbia,
Indiana, Kansas, Kentucky, Massachusetts, Minnesota, Missouri, New
York, North Carolina, Oregon, Texas, Utah, Washington state and Canada
(Montreal).
Last spring, a pilot study of minocycline, an antibiotic, in people
with ALS showed the drug could probably be tolerated at high doses.
This evidence, combined with encouraging laboratory studies in mice,
led the researchers to plan a large clinical trial that could test minocycline’s
effectiveness, as well as its safety and tolerability. (See “Evidence
Mounts for Minocycline,” June 2002.)
The new study, which will begin recruiting participants early next
year, will test the effects of the drug versus a placebo (inactive substance)
for 13 months.
The investigators will measure changes in general function (as detected
by the ALS Functional Rating Scale), pulmonary function, strength, survival
and quality of life in trial participants.
After the study investigators will compare the ratings in those who
were on the drug and those on placebo.
“We’re quite excited,” Gordon said of the new trial.
“We really want to make this a good study. I think minocycline
has a unique mechanism of action as both an anti-apoptotic [anti-cell
death] and anti-inflammatory agent. Medications like this haven’t
been tested before in ALS, so we’re quite hopeful.”
For more information, contact Gordon at (505) 272-3342 or Jason Massin in San Francisco at (415) 923-3967 or jmass@cooper.cpmc.org.
Also check www.mda.org/research/ctrials.aspx,
for updated trial information.
Multi-Drug Study Opens in North Carolina
A
nine-month, 15-person study to test the safety of a combination
of five drugs that may
help in ALS begins this month at the MDA/ALS Center at Carolinas Medical
Center in Charlotte, N.C. Center Director Jeffrey Rosenfeld will oversee
the study.
All the drugs being tested have been approved by the U.S. Food and
Drug Administration and were selected at a conference held in May 2000.
Various pharmaceutical companies are funding the effort, Ruth King,
research coordinator at the Carolinas Center, noted.
If the safety results are good, the investigators will expand the study
into a placebo-controlled, double-blind trial that will probably include
100 participants at six centers.
“Some of these drugs have side effects, and they may not interact
well,” King notes. “So we don’t want people combining
these on their own.”
However, she emphasized that participants will learn what the study
drugs are during the informed consent process.
For information, contact King at (704) 355-8699 or ruth.king@carolinashealthcare.org.
How Motor Neurons Die
R
esearchers have identified a biochemical pathway that appears to specifically
control the death of motor neurons — the muscle-controlling nerve
cells killed by ALS. They also show that in cell models of ALS, this
death pathway is abnormally sensitive to external triggers.
A pathway of signals, from the protein FasL
to the small compound nitric oxide (NO), sends motor neurons
toward their death. The pathway could be on a hair trigger
in ALS.
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Neuronal death is a normal part of embryonic development, when our
bodies produce far more neurons than they need. Each type of neuron
appears to have a distinct pathway — a chain of biochemical events
carried out by specific proteins — that sends it toward death.
But little is known about the death pathway in motor neurons. Brigitte
Pettmann and her colleagues at the Developmental Biology Institute of
Marseilles in France decided to investigate that pathway, hoping to
find clues to why motor neurons die in ALS.
In a 1999 study, they found that two interacting proteins called Fas
and FasL are key players in the death pathway. Both proteins are found
in the outer membrane (surface) of cells, and when FasL attaches to
Fas, it kills the Fas-containing cell.
In a study in the Sept. 12 issue of Neuron, Pettmann’s group
collaborated with researchers at the University of Alabama at Birmingham
and the University of California, San Diego, to identify a series of
proteins that comes into play after Fas stimulation. In experiments
on cells in a laboratory dish, they show that dying motor neurons, but
not other cell types, specifically activate a protein called neuronal
nitric oxide synthase (nNOS), which generates bursts of the small signaling
compound nitric oxide (NO).
In further experiments, they derived motor neurons from mice carrying
mutations in the SOD1 gene, which is linked to familial (inherited)
ALS. The mutant motor neurons died when exposed to very low doses of
purified FasL, and were even killed by NO, which, by itself, is non-toxic
to normal motor neurons. Other cell types from SOD1 mice showed normal
sensitivity to FasL and NO.
Pettmann and her colleagues conclude that Fas, nNOS and other proteins
in the motor neuron death pathway might be on a hair trigger in ALS.
The idea could even hold true for sporadic ALS (SALS), since antibodies
that stimulate Fas have been found in the blood of some SALS patients,
they point out.
Drugs that inhibit Fas, nNOS and other proteins in the pathway might
prove effective for treating ALS and are already being tested in SOD1
mice, they say.
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Wings Over Wall Street WOWS New York, Raises
$1.8 Million
T
he Wall Street community, celebrities and MDA supporters teamed up
to deliver an unprecedented punch in the fight against ALS at MDA’s
Wings Over Wall Street benefit in New York.
The event, held Oct. 3 at the Marriott Marquis in Times Square, raised
more than $1.8 million for MDA’s ALS research program.
 Event chairman and MDA Vice President Michael Beier is flanked by
MDA Board members John Tognino (left) and Victor Wright. |
Funds raised will directly benefit the research teams led by Hiroshi
Mitsumoto, director of the Eleanor and Lou Gehrig MDA/ALS Center at
Columbia University in New York, and Jeffrey Rothstein of the Robert
Packard Center for ALS Research at Johns Hopkins in Baltimore, who co-directs
the MDA/ALS Center at Hopkins.
More than 1,700 people attended the gala event, which included a cocktail
reception; silent, live and research-minute auctions; and awards highlighting
New Yorkers with ALS.
Former New York Yankees pitcher David Cone presented the event’s
Spirit Awards to Christopher Pendergast of Long Island, N.Y., and Peter
Demmerle of New York. The awards honor people who have worked for the
eradication of ALS by increasing awareness and raising funds to search
for a cure.
Several TV and film stars added their
celebrity to the event: From left
are Maria Bello, Kennya and Stephen
Baldwin, Tonya Walker-Davidson, William
Baldwin and Mariska Hargitay.
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Pendergast is founder and president of Ride
for Life, a grassroots group that holds an annual
parade of people with ALS in theirelectric wheelchairs
to raise awareness of the disease.
Demmerle, an insurance lawyer with the international firm of LeBoeuf,
Lamb, Greene & MacRae, has worked to seek research funding from
legislators and private sources since he received a diagnosis of ALS
almost three years ago.
The evening, chaired by Michael Beier, director of equity trading for
Credit Suisse First Boston, was the second such gathering to raise funds
for MDA’s ALS research.
Wings of Hope, held in 2001, was initiated by Toni Diamond, a Massachusetts
woman with ALS, and her husband Warren Schiffer, both former flight
attendants for United Airlines.
Diamond and Beier, an MDA vice president who has ALS, each presented
awards that were created in their honor at the event.
 The Beier family, Michael and Theresa and their children, Dustin
and Carly, pose for photos with event emcee William Baldwin. |
The Diamond Award was presented to Mitsumoto. The Beier Award went
to Norma Steck, a New York woman with ALS who has led support groups
and spearheaded fund-raising campaigns for research and patient care.
Actor William Baldwin was the emcee for the evening, and he was joined
by several celebrities: his brother and fellow actor Stephen Baldwin,
talk show host and comedian Caroline Rhea, Mariska Hargitay of TV’s
“Law & Order, Special Victims Unit,” TV and film actress
Maria Bello and “One Life to Live” actress Tonya Walker-Davidson.
The auctions also boasted a star-studded touch, with guitars autographed
by the rock band U2 and Eric Clapton going for $25,250 and $8,000 respectively.
A photograph of New York fire fighters raising a flag on Sept. 11, 2001,
sold for $25,000. An additional $185,000 was generated through the silent
auction.
Check www.wingsoverwallstreet.org for information about next year’s event.
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Spiritual Resource for Caregivers
Candlelights for the Family Caregiver’s
World: Spiritual Keys for Avoiding Caregiver
Burnout and Promoting Inner Peace,
by Alice Johnson, Ed.D., and John Johnson Jr.,
Ed.D., 2001, 374 pages, $10. Mal-Jonal Productions,
(305) 353-4061, www.maljonal.com.
Alice Johnson has been a caregiver for her
husband, John, who has multiple sclerosis, for
45 years. Needless to say, they’ve learned
a thing or two about coping with and mastering
the stress of caregiver burnout. In this powerful
book, they share six spiritual keys —
“candlelights” — to unlock
the door to inner peace, despite the demands
of being a caregiver.
Their approach is both practical and spiritual. The power of journaling,
particularly gratitude journaling, is the first “candlelight.”
Guidance toward practicing gratitude is the second key. It’s
clear that in following the prescribed exercises at first you may have
to “fake it ‘til you make it,” but with the Johnson’s
guidance you just might find yourself on the road to serenity.
The “candlelight” of kindness is the third spiritual key
the Johnsons share. Recognizing that caregivers acquire the shared wisdom
of kindness from their experiences is both enlightening and uplifting.
You’ll have to read the book to find the other three “keys.”
Though the book is emphatically Christian in orientation, the basic
premise that “kindness is the true universal religion” allows
any reader to find personal “candlelights” within these
pages.
At the end of the book, readers are asked to submit their own stories
for upcoming books in the Candlelights series.
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Rare Diseases Legislation Passed by Congress
C
ongress passed two bills in October that boost efforts to find treatments
and cures for rare diseases, including ALS.
The Rare Diseases Act (H.R. 4013) establishes an Office of Rare Diseases
at the National Institutes of Health and provides for rare disease regional
“centers of excellence.” The Rare Disease Product Development
Act (H.R. 4014) amends the Orphan Drug Act to authorize grants and contracts
for the development of drugs for rare diseases and conditions.
“Rare diseases” are defined as those affecting less than
200,000 people in the United States.
The bills’ passage is only part of the battle. Now the programs
have to be funded through an appropriations bill, said Diane Dorman,
vice president for public policy for the National Organization for Rare
Disorders (NORD) in Washington.
She encourages anyone interested to keep writing and calling legislators
and asking that they ensure adequate funding.
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