The national spotlight will again be on ALS when the Jerry Lewis MDA
Telethon takes to the airwaves this Labor Day weekend.
For the second consecutive year, the broadcast will include a profile
of Christopher Rice,
a Houston man with ALS. Rice, 39, is the father of three, and works
as an information technology manager for Lincoln Property Co.
Rice and his wife, Reda, are co-chairpersons of MDA's ALS Division.
The videotaped profile will detail how ALS has interrupted their lives,
and how they cope as the disease progresses. They'll also be interviewed
during the broadcast. (See "ALS Is Not Who I Am")
Pulitzer Prize-winning photojournalist Eddie Adams, who received a
diagnosis of ALS in March, will also be featured in a videotaped profile.
Adams, 71, lives in New York with his wife, Alyssa, and their 14-year-old
son, August. The recipient of more than 500 national and international
awards for his photos, he's been a special correspondent for Parade
magazine for the past 20 years, and has taken many memorable cover photos
of Jerry Lewis and people served by MDA for the Sunday supplement's
Telethon coverage.
In addition to the nationally broadcast profiles, many individuals
and families who are affected by ALS will be profiled and/or interviewed
on local segments of the Telethon.
These interviews are an effective way to educate the public about ALS
and get support for MDA's efforts to stop it, said Jerry Lewis, MDA
national chairman and Telethon star.
"The Telethon is an excellent opportunity to teach Americans how
neuromuscular diseases like ALS can devastate adults and their loved
ones with virtually no warning," Lewis said.
ALS RESEARCH ROUNDUP
Peripherin Gene Implicated
in ALS
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|
Hiroshi
Mitsumoto |
Experiments in rodents have suggested that abnormalities in a protein
called peripherin might cause the death of motor neurons, the
muscle-controlling nerve cells that are lost in ALS.
Now, according to a paper in the July issue of Brain Pathology, there
may be evidence for such a phenomenon in people with ALS. Among the
authors are MDA grantee Arthur Hays in the Department of Pathology
at Columbia University in New York and Hiroshi Mitsumoto, co-director
of the MDA/ALS Center at Columbia.
The researchers discovered that a 42-year-old man with ALS and no
family history of the disease had a mutation in both copies of his
peripherin gene.
An examination of the man's motor neurons (after his death) showed
that some of them contained unusual clumps, or aggregates, of proteins
that included peripherin.
The fact that the man's parents didn't have ALS suggests that peripherin
mutations can lead to a "recessive" pattern of ALS inheritance.
In that pattern, both parents have mutations in one of their two copies
of the peripherin gene and therefore are "carriers" of ALS,
remaining unaffected themselves.
When the scientists put abnormal peripherin into cells in the lab,
aggregates formed.
"These aggregates presumably interfere with transport of biological
materials inside a nerve fiber," Hays said, "but this is
a hypothesis that needs to be tested in the laboratory."
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Arthur
Hays |
Abnormalities of transport inside the nerve fibers appear early in
animal models of ALS and are believed to be important in the dysfunction
and death of motor neurons.
Adding normal peripherin to the cells in the presence of the abnormal
peripherin reduced the number of clumps, supporting the hypothesis
that having one normal and one flawed peripherin gene wouldn't be
enough to cause the disease.
Hays added that the mutations in the man's peripherin gene may have
caused the disease either directly or by modifying another causative
factor, perhaps leading to an earlier than usual onset of the disease.
Trial of MS Drug Opens in New York
Researchers at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia
University Medical Center in New York are seeking 30 people with ALS
to participate in a trial of a drug that's on the market for multiple
sclerosis.
The drug, glatiramer acetate (brand name Copaxone), is thought to
cause T-cells of the immune system to work against rather than enhance
inflammation. Inflammation has been implicated as a factor in ALS.
The drug will be injected, and not all study participants will receive
it. Participants must meet enrollment criteria and be able to travel
to the study site in New York at the start of the trial and each month
for the next six months.
For details, contact Carolyn Doorish at Columbia at (212) 305-2027
or cd2141@columbia.edu.
Video Review
"David Mairs: A Remarkable Man in
a Challenging World," $14.95. Morgan Stock
Company, (831) 624-2828, morganstockco@redshift.com.
When David Mairs received a diagnosis of ALS, the doctor told him
to go have fun, and they'd call him if there was anything they could
do.
"That was 1987. They haven't called, but I've been having fun
ever since," says Mairs, the subject of a documentary film that
takes a look at one man living with ALS and his positive outlook.
The 30-minute film is divided into segments about Mairs' diagnosis,
his wife, Edith, his previous careers, and his life today in Monterey,
Calif. Mairs uses a power wheelchair for mobility, and has some movement
in his legs and head.
The video has a novice quality; many scenes are filmed with the camera
in a fixed position, recording Mairs' sincere responses and stories.
(Mairs' voice is affected by ALS, but the film includes subtitles.)
While it's obvious that Mairs has had a positive effect on his circle
of friends — including one who produced the video — the film lacks
the detail to convey the uniqueness of the man or his disease.
Viewers are left wondering about topics alluded to but not fully
addressed, such as the current state of the multimillion-dollar company
he started, Mairs' children, and time he spent in a nursing home.
Also absent are details about his experience as a "roadie"
with Jefferson Airplane, a fact prominently featured on the video
cover sleeve.
However, people with ALS may find it inspiring to see that Mairs
lives a full life despite his disease, complete with socializing,
travel, using public transportation, taking history classes, and even
remarrying a few years ago.
The film also demonstrates some of the assistive technology that
helps Mairs stay active. This includes "proximity switches"
that he uses to control his power chair with his head, and special
computer accessories that give him access to the Internet.
In one of the more touching segments of the film, Mairs speaks of
promises he's made to himself about his life with ALS. His children
keep him focused, he said, and help get him through the darker moments.
"I want to set a good example because we will all be confronted
with our own mortality," he said.
Fire Fighters
Keep Fighting for 50 Years
by Kathy Wechsler
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|
From
left, Steve Williams, president of Houston IAFF Local 341,
met with Michael and Cara Waits when they visited the MDA/ALS
Center in Houston. |
For 50 years, the International
Association of Fire Fighters has been a staunch ally in MDA's
fight against more than 40 neuromuscular diseases, including amyotrophic
lateral sclerosis.
As MDA's largest sponsor, the IAFF and its members
help the Association year-round through activities such as the Fill-the-Boot
campaign, golf and softball tournaments, chili cookoffs and other
special events.
This year, MDA and the IAFF are celebrating the
50th anniversary of their partnership, with special salutes scheduled
on the Jerry Lewis MDA Telethon Sept. 5-6 and at the IAFF's convention
Aug. 16-20 in Boston.
Over the years, the IAFF has raised nearly $200
million for MDAs programs, including research and medical services
at 33 MDA/ALS centers nationwide, and medical equipment and support
for people with ALS and their families.
ALS Hits Home for a Few Heroes
It's a sad irony that some fire fighters who have
worked hard to raise funds to cure ALS and other neuromuscular diseases
have themselves developed ALS.
Honored to have been part of the Shreveport Fire
Departments Fill-the-Boot campaign for MDA, Michael Waits of Arcadia,
La., now has a real appreciation of what the fight is all about.
Waits, 33, worked as a fire fighter and emergency
medical technician with IAFF Local 514 for five years. In early
2001, Waits received a diagnosis of ALS. He remained on the job
for two more years, until his muscle weakness prevented him from
going in to work.
"After my diagnosis the IAFF-MDA relationship
became even more important to me," said Waits, who uses a power
chair and has slurred speech. "Now I can see where the money's
going and what the fund-raising work was for. I've become more aware."
Waits gets his strength from his wife of six years,
Cara, and their 2½-year-old daughter, Michaela. He receives medical
care at the Ronny & Linda Finger MDA/ALS Center at Baylor College
of Medicine in Houston.
Proud to Serve
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|
Robert Ortega |
Another former fire fighter with ALS is Robert Ortega,
who lives with his wife, Susan, and three children in Lebec, Calif.
He was with the Los Angeles City Fire Department and a member of
IAFF Local 112 until 2003, when he retired after 22 years.
Ortega was proud to serve as a fire fighter, and
turning in his IAFF badge was extremely difficult for him. Always
an athlete, Ortega, 51, is still able to walk and talk and doesn't
need any assistance with breathing, but he finds it difficult to
perform daily living tasks.
Robert D. McAlvey of Lansing, Mich., also knows
ALS firsthand. In his 20 years with the Meridian Professional Fire
Fighters Association, McAlvey served as a paramedic, fire fighter
and fire officer.
Found to have ALS in 2003, McAlvey, 45, continued
working because his symptoms (muscle spasms, weakening voice and
trouble with fine motor skills) didn't interfere with his duties.
On Jan. 9, he was promoted to captain on his final day of active
duty.
McAlvey, who has slurred speech and trouble grasping
things with his hands, gets support and assistance from his wife,
Tina, and five children. McAlvey is still able to walk on his own.
A Match Made in Heaven
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|
Robert McAlvey |
Fire fighters are dedicated to saving lives and
preventing suffering. That focus makes the IAFF and MDA a perfect
match.
From rescuing babies from burning buildings to raising
money to help buy children and adults with neuromuscular diseases
much-needed wheelchairs, leg braces and communication devices, fire
fighters never lose sight of whats really important — life.
"It's important for communities to understand
that fire fighters are laying their lives on the line every day
in their neighbors' behalf, but they still have the time and commitment
to raise money for such a worthy charitable cause," said IAFF
General President Harold A. Schaitberger, who has held the office
since 2000. Schaitberger is also an MDA vice president.
To celebrate the golden anniversary, the IAFF has
prepared for its best year ever in supporting MDA, Schaitberger
said. He promises that, on the Telethon, he'll be able to announce
an even bigger contribution than last year's record-breaking $18.3
million.
ALS Is Not Who I Am
by Christopher Rice
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|
Chris and Reda Rice,
co-chairpersons of MDAs ALS Division, will appear on the Jerry
Lewis Labor Day Telethon Sept. 5-6. |
My name is Chris Rice. I'm a husband, father of
three, son, brother and friend. I'm an information technology manager
for Lincoln Property Company in Houston. I'm a regular guy, trying
to do the best I can.
Oh yeah, I'm also a guy who has ALS.
During the nine-month process of trying to find
a diagnosis, I worried that I might never find out what was wrong
with me. Then I worried that I would find out what was
wrong with me.
Getting the diagnosis, in late 2001, was shocking.
My first thoughts were of my family and their future.
I worried about finances, about how fast the disease
would progress, about how long I would be able to work, talk and
walk. My wife, Reda, and I turned to the Internet to see what we
could learn, but 90 percent of the information we found was "worst-case
scenario."
Control
I then came to a decision. I would plan for the
things I could control and not worry about the things I couldn't.
I decided not to allow this disease to define me.
I can't afford to expend energy on things I can't control. I need
to expend energy on living my life. It wastes my energy to worry
why this is happening to me or what I may have done to trigger it.
Initially, these thoughts and questions went through my mind, but
now I've accepted that I have this disease.
How fast my ALS progresses is something else I have
no control over. What I can do is follow the instructions of my
medical team, take medication and vitamins that are good for me,
and follow advice on how to get the most out of every day.
Serving as national co-chairperson of MDA's
ALS Division with Reda is something else I can do. Raising awareness
about ALS in turn helps MDA raise money to find a way to stamp it
out.
In short, I can't do anything to change the past
but I can have an impact on the future.
Care
Every three months, I go to the Ronny and Linda
Finger MDA/ALS Center in Houston. The doctors and staff are wonderful
and a great support.
At the clinic, I have a serious, sobering discussion
about where I am in the disease progression. I also get information
on what to expect and learn how best to deal with what may come
next. At day's end, I go home knowing that the professionals are
doing all they can to eradicate this disease.
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|
The Rices with
(from left) Shelby, Tori and Mason. |
Other people with ALS whom we've met at the clinic
have become our friends. Talking with them inspires me and reinforces
my belief that I'm handling this disease in the best way possible.
Faith, family, friends and a positive attitude all
contribute to the great life I'm living.
Of course, as my disease progresses I have to make
adjustments. There are things that I simply can't do anymore, such
as water skiing, snow skiing or playing sports.
But up to this point, I view the adjustments I have
to make to do the things I still can do as just different ways of
achieving the same ends.
Having said this, I also say: Make no mistake about
it; nothing about having this disease is easy.
It's not easy for my wife and children, other family
members, friends or co-workers. It's not easy for the doctors to
see their patients getting worse and worse. It's not easy for the
researchers who feel the urgency to find a cure.
But I'm very grateful to all of them for their tireless
efforts.
I believe that how you handle adversity affects
everyone around you. In my estimation, it's not what you're handed,
it's what you do with it that's important.
MDA Adds ALS Center in Pittsburgh
MDA's ALS Division has designated an MDA/ALS center at the University
of Pittsburgh Medical Center.
David Lacomis, director of the MDA clinic and associate professor
of neurology and pathology at UPMC, directs the Pittsburgh center.
A complete list of the 33 MDA/ALS centers
can be found at www.als-mda.org/clinics/alsserv.html.
To make an appointment at an MDA/ALS center, contact the MDA office
nearest that center. All of MDA's 235 hospital-affiliated clinics
serve people with ALS.
Fourth
Annual Wings Gala to Take Flight in September
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|
Co-host
and singer Tony Orlando (rear center) shares a moment at the
2003 Wings Over Wall Street with the founders of the event,
Toni Diamond (front center) and her husband Warren Schiffer,
as well as Theresa Beier (rear left), widow of former Wings
Chairman Michael Beier. Photo courtesy of Jim Bulgatz Photography. |
New Yorkers will again join
to raise money for MDA's ALS research program at the 2004 Wings
Over Wall Street.
The fourth annual Wings gala
will be held from 6 p.m. to 10 p.m. on Sept. 29 at the New York
Marriott Marquis in New York's Times Square. The event is a VIP
cocktail reception featuring live, silent, and research-minute auctions.
The Wings event is a favorite
of the financial and Wall Street communities, and has raised more
than $3.6 million since its inception in 2001.
The 2003 event raised over
$1 million for MDA's ALS Division, and was highlighted by several
celebrity appearances, including those of actor and event host William
Baldwin, singer Tony Orlando, and baseball great David Cone.
This year's Wings event will
include presentations of three awards to honor some of those heavily
engaged in the battle against ALS.
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|
Actor
William Baldwin at the 2002 Wings Over Wall Street with the
late Michael Beier and family |
Andrew T. Knipe of Oceanside,
N.Y., will receive the Spirit Award, an honor given to those with
outstanding commitment to finding a cure for ALS. Knipe, senior
vice president and creative director of the advertising agency BBDO,
received a diagnosis of ALS in 2000.
Knipes' efforts to promote
ALS awareness include producing six film tributes on notable sports
figures as a fund-raiser for ALS awareness. His life with ALS was
the subject of a feature on ABC's "Good Morning America."
David Memmott of Rumson,
N.J., will receive the Michael P. Beier Award for motivating others
to find a cure. The award is named in honor of former Wings Chairman
Michael Beier, who was a longtime friend of Memmott's and died of
ALS in 2003 at age 40.
Memmott is managing director
at Morgan Stanley, and a key member of the event's organizing committee.
Stanley H. Appel is the recipient
of the Diamond Award, given to a scientific leader dedicated to
the eradication of ALS. Appel, a member of MDA's Board of Directors,
is professor and chairman of 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) at Baylor.
The Diamond award is named
for Wings event founder Toni Diamond, a former United Airlines flight
attendant with ALS.
To purchase tickets for the
2004 Wings Over Wall Street, call (212) 689-9040, or visit www.wingsoverwallstreet.org.
