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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.
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Check Out the New Digital Version of Quest!
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Photography Bursts Fourth
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This still-life image, "Carmen Red," was created by Pennsylvania photographer Carl Yeager, who has SMA. Along with a portfolio of his work, this feature illustrates how digital technology has made photography much more accessible for people with disabilities.
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Stories by Topic
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| by Kathy Wechsler |
Decked out in bright lights and fancy décor, the International
Ballroom of The Beverly Hilton in Beverly Hills, Calif., isnt awaiting
the Golden Globe Awards. This Labor Day weekend, the star-studded
event in question is the Jerry Lewis Telethon for the Muscular Dystrophy
Association. And the stars are the children and adults served by
MDA.
Nothing warms Telethon viewers hearts more than seeing the stories
of children and adults affected by neuromuscular diseases and how
much they appreciate MDAs efforts to wipe out these often life-threatening
diseases. Put this together with valuable information and the nations
top entertainment, and you have the special recipe for the 40th
annual MDA Telethon.
During past Telethons, star Jerry Lewis has been moved to tears
because of the inspiration and emotion his kids, young and old,
brought to the 21½-hour broadcast. This year is no different
for MDAs National Chairman.
Old Friends...
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Returning Telethon
guests include MDA National Goodwill Ambassador Morgan Fritz
and family. |
Back for her third national broadcast of the Telethon, this time
as MDA National Goodwill Ambassador, the adorable 6-year-old Morgan
Fritz, who has spinal muscular atrophy, will be accompanied by her
parents, Ron and Susan.
Morgan and her family live in St. Peters, Mo., and travel the country,
representing MDA and the people it serves at fund-raisers and sponsor
events. Morgans smiling face graces several MDA national promotional
items. To learn more about this energetic young lady, see Quests Pretty in Pink (January-February).
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Christopher
and Reda Rice, co-chairpersons of MDA's ALS Division, will
also appear on the Telethon this year as returning guests. |
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Christopher and Reda Rice of Houston will also make
their third appearance on the national Telethon.
This is their second year as co-chairpersons of
MDAs ALS Division. In that capacity they help raise
awareness of MDAs leading role in putting an end
to amyotrophic lateral sclerosis.
Together with his wife, Chris, 40, who was found
to have ALS (Lou Gehrigs disease) in 2001, makes
public appearances, gives interviews and records
public service announcements for MDA.
... and New Ones
Telethon viewers also will say hello to new friends
wholl be profiled on the national broadcast.
Theyll meet Luke Christie of Due West, S.C. Luke, 12, has type 2
spinal muscular atrophy and is the MDA Goodwill Ambassador for South
Carolina. An active Boy Scout who loves to read, write and listen
to music, Luke enjoys spending time with his two older brothers.
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Luke
Christie |
Hes extremely ambitious and often thinks about
the future, but also appreciates the opportunity
to be a regular kid at MDA summer camp.
The Telethon will introduce Delle Chatman, a Chicago-area writer,
artist, teacher and single mother. In 2002, Chatman, 54, received
a diagnosis of dermatomyositis, which appeared in conjunction with
her recently diagnosed ovarian cancer. At last years local Telethon
broadcast, Chatman and her daughter, Ramona Chatman Morris, 10, answered
phones to help MDA.
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Delle Chatman |
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An active member of her Catholic parish, Chatman has led several
workshops and church retreats as well as written and directed a church
play. Each summer she teaches two classes for a nonprofit writing
program in Los Angeles. Chatman is director of the Media Arts Division
at Northwestern University's National High School Institute.
Its also Stuart Nichols first appearance on the national Telethon.
Joining him in the profile will be his wife, Lisa, and their two
adult children, Andrew and Whitney.
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Stuart
Nichols |
A global financial accounting manager for Exxon-Mobil
in Houston, Nichols, 53, received a diagnosis of
ALS in early 2004 and participates in MDA events
to raise money for ALS research. Nichols was profiled
on last years regional Telethon and featured in
Staying
in the Game in the MDA/ALS Newsmagazine (June).
All-Star Lineup
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Cynthia
Garrett, Norm Crosby and Jann Carl will
again co-host MDA's national Labor Day broadcast. |
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Taking the stage with Lewis, MDA Board member Ed McMahon will return
for his 38th year as the shows anchor. Jann Carl of Entertainment
Tonight, Cynthia Garrett from TVs Life and Style, and comedian
Norm Crosby will serve as co-hosts. Carl is an MDA director, while
Garrett and Crosby are MDA national vice presidents.
Award-winning recording artist and MDA National Youth Chairman Billy
Gilman will host the Telethons youth segments and perform songs from
his latest album, Everything and More.
Starting at 9 p.m. EDT and running for 21½ hours, the Telethon
will be broadcast nationwide and in Canada on 190 Love Network stations.
And your friends around the world can tune into the Telethon and make
donations at MDAs Web site, www.mda.org.
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Telethon
star Jerry Lewis and anchor Ed McMahon |
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Telethon Webcast
In addition to watching the Telethon
on an MDA Love Network station, you can see it online at www.mda.org, with streaming
video provided by RealNetworks.
You can also make secure
Telethon pledges, or donations to MDA year-round, via
the Quick-Click
Donation button on the MDA sites home page.
CITGO Races for a Cure
During this summers last three Grand
Am races, celebrated international race car driver Milka Duno
drove her CITGO-sponsored SUPERGARD Pontiac sporting a new
blue, red and white paint job and the MDA logo. CITGO, one
of MDAs largest national corporate sponsors, created the
paint job to raise awareness of the Telethon at races in Birmingham,
Ala., Watkins Glen, N.Y., and Lexington, Ohio.
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American Express
Again to Boost
Telethon Donations
As its done since 1998, MDA
national sponsor American Express will offer something extra
on this years MDA Telethon. For each Telethon pledge made using
an American Express Card, the company will add an extra $5 donation
to MDA.
Cardmembers may donate any amount
to earn the additional contribution. Viewers may use their American
Express cards to make secure Telethon donations for phone pledges
or online pledges at www.mda.org
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| by Kathy Wechsler |
As his music career continues
to skyrocket, award-winning recording artist Billy
Gilmans commitment to the Muscular Dystrophy Association
never falters. In fact, like the 17-year-olds voice,
it only deepens.
'Awaken the Music'
Back from a two-year period of vocal rest caused by a changing
voice, the Hope Valley, R.I., teen this spring released his fifth
album, Everything and More, a fun mix of traditional country,
pop, rock-flavored country and bluegrass. Billy, whod released
four CDs before his 15th birthday, dedicated his latest project
to the late Mattie J.T. Stepanek (see Matties Heartsongs").
Influenced by Matties positive attitude and message of hope and
peace, Gilman has added a new sound and style to his music.
I pay much closer attention to detail and to meaning, thanks to
Mattie, because the messages in his poetry were so deep and so innocent
at the same time, said Gilman, who made friends with MDA's National
Goodwill Ambassador in 2002. His poems set the standard for the
message I want to have for the rest of my life throughout my music.
Recordings, performances, media appearances, interviews, promotional
tours, and photo and album signings are time-consuming for a powerhouse
vocalist like Gilman. That schedule doesnt leave him with much
downtime, but Billys relationship with Mattie only has made him
work harder to put an end to neuromuscular diseases.
'Everything and More'
Serving his third term as MDAs National Youth Chairman, Gilman
leads thousands of teenagers and young adults in their efforts to
support the Association through MDAs Teens Against Dystrophy program.
My careers important, but working with MDA is a little more important,
Gilman said. Time is fragile for some kids and adults. We have
to fight for that cure every day!
When longtime MDA sponsor DECA (an association of marketing students)
held its International Career Development Conference in 2003, Billy
represented MDA for the first time. Since then, Billy has been invited
each year to the annual gathering of some 13,000 high school students
and advisers to present awards and speak about the important connection
between DECA and MDA.
Gilman also has sung at conferences of the brokers, agents and
associates of ERA Real Estate, another longtime MDA national sponsor,
and attends MDA benefits across the country.
In June, Gilman and his co-manager and vocal coach, Angela Bacari,
traveled to MDAs national headquarters in Tucson, Ariz. During
their stay, Gilman videotaped public service announcements, segments
of the Jerry Lewis MDA Labor Day Telethon and an MDA summer camp
training video.
Gilman will be in the Telethon spotlight hosting youth segments
and performing songs from his new album this Labor Day weekend.
Meeting some of the families we serve and seeing the magic happen
during Telethon, its all a wonderful experience. Its been a really
wonderful time, he said.
'Something 'Bout Heaven'
This summer Billy made his first visit to MDA summer camp. Accompanied
by his parents, Bill and Fran Gilman, and his brother, Colin, 14,
Billy attended Open House/VIP day and autographed pictures and CDs
for campers at Camp Florian in Canton, Mass.
I got to see firsthand what summer camp is all about,
he said. My favorite part was how the kids have
the opportunity to go horseback riding, a fun activity
they might not be able to do outside of camp. I
cant wait to go next year!
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'Music Through
Heartsongs' Inspires Students
The fourth- and fifth-graders 2004-2005
school year at New Albany Elementary School in Ohio was
extra special, thanks to the joint efforts of Billy Gilman
and Mattie Stepanek. In a year-round project called Learning
Through Heartsongs, 26 teachers received Gilmans Music
Through Heartsongs CDs, which feature Matties poems put
to music, as well as Matties books of poetry.
Designating one song from the CD and
its corresponding poem from the books to each month of the
school year, teachers gave thought-provoking assignments to
interpret each poem. The school created a Heartsong Hallway
to recognize and display students work. Fourth-grade classes
also held fund-raisers, raising $2,400 for MDA.
Learning Through Heartsongs gave
the students opportunities to understand more about muscular
dystrophy, while providing fun and a creative outlet. The
school plans to use the program as a model for future exploration
of diversity through poetry and music. |
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| by Alyssa Quintero |
Its been more than a year since best-selling poet, peacemaker and
MDA spokesman Mattie J.T. Stepanek died.
Although Mattie lost his battle with mitochondrial myopathy on
June 22, 2004, just shy of his 14th birthday, in the midst of his
third term as National Goodwill Ambassador, he still is an ambassador
for MDA and one of its most prominent voices.
Several projects honor Matties life and legacy, while his mother,
Jeni, carries out her sons mission of working for peace, hope and
an end to neuromuscular diseases.
A television special about Mattie has aired on MDAs Love Network
stations in August and early September. Play After Every Storm:
Remembering Mattie Stepanek features Jeni Stepanek and is hosted
by Jann Carl, weekend anchor and correspondent for Entertainment
Tonight.
The 30-minute tape will be shown during the MDA Telethon, and Jeni
Stepanek will appear on the broadcast.
Even though Matties body has died, its my hope that Matties
spirit continues to serve as an ambassador for MDA, Stepanek said
as the show was being taped. He knew that his role was to advocate
for MDA, reminding people about their gifts of hope, and funds for
equipment, camp and research toward cures.
Living on in Print
Matties sixth and final volume of poetry, Reflections
of a Peacemaker: A Portrait Through Heartsongs, was
released on Aug. 23 by Andrews McMeel Publishing.
The new book, Stepanek said, is so much more than poetry. Its
a biography in poetic words that allows us to see into Matties
life. We really get to see how he viewed the world in eight chapters.
The book includes Matties last poem and 250 previously unpublished
poems, photographs and artwork spanning the decade from age 3 when
he began writing. Oprah Winfrey penned the foreword, and the book
includes personal tributes to Mattie from MDA Board member Carl,
Maya Angelou, Larry King and President Jimmy Carter.
A portion of the proceeds from sales of Reflections of
a Peacemaker will be donated to the
MDA Mattie Fund (see below).
Stepanek also has prepared a second book, Just Peace:
A Message of Hope, a collection of essays and e-mail
correspondence, which Mattie wrote with the support and collaboration
of Carter. Its set to hit bookstores in early 2006.
Mattie's Park
In the Stepaneks hometown of Rockville, Md., the mayor and city
council voted unanimously to create the Mattie J.T. Stepanek Park,
a 26-acre facility in the King Farm community.
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At
the parks groundbreaking ceremony, Jeni
and Micah were joined by (from left) Andy
Gordon, president of King Farm Citizens
Assembly; Burt Hall, director of Rockville
Recreation and Parks Department; and Bob
Balkam, a neighbor and family friend. |
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On June 18, about 200 family members, neighbors and friends joined
local and state officials, including Maryland Lt. Gov. Michael S.
Steele and U.S. Rep. Chris Van Hollen, to break ground for the park.
Plans call for the fully accessible park to have several playing
fields and a dog park. Matties writing will be displayed on plaques
throughout the park, Stepanek said.
The parks central feature will be a statue of Mattie, with his
service dog, Micah, beside him, sitting in his wheelchair at a chess
table. Across from Matties statue will be an empty chair with a
plaque bearing his words: Peace is possible It can begin simply
over a game of chess."
Stepanek and Micah visit the site of the park every day, and they
look forward to sitting with Mattie again one day. Its very exciting,
she said. I cant wait to have Mothers Day with my son and talk
peace with Mattie.
MDA Mattie Fund and Fellowship
MDA created the MDA Mattie Fund in response to the outpouring of
public grief and support following the death of its popular ambassador.
The fund, established to promote research on childhood neuromuscular
diseases, exceeded $1 million in its first year.
Matties dear friend, Katherine Carl Sears, 13, raised nearly $5,000
for the fund.
After Mattie died, I decided that I wanted to make a difference
[for MDA] and be a part of the effort, said Katherine, who is Jann
Carls daughter and got to know Mattie during the 2002 MDA Telethon.
In May, MDA announced the creation of the Mattie Stepanek Postdoctoral
Research Fellowship. The grant provides a two-year stipend to a researcher
specializing in mitochondrial myopathy.
The disease, which also affects Jeni Stepanek and took the lives
of all four of her children, causes generalized muscle weakness and
can affect respiration, heart rate, blood pressure, speech, swallowing
and digestion.
Moving Forward
In addition to her duties as an MDA national vice president, Stepanek
is an author, Ph.D. candidate and faculty research associate at
the University of Maryland in Baltimore.
She often speaks publicly in behalf of MDAs efforts to help families
like hers.
There are days when I am blessed with opportunities to share stories
and lessons learned from my children, she said. Carrying on Matties
work gives me a reason to get up each day. Sometimes I ask myself
if Im doing enough.
Together, Jeni and Mattie are doing plenty. The Johnson & Johnson/Rosalynn
Carter Institute Caregivers Program created the Mattie J.T. Stepanek
Intergenerational Scholarship to support education in intergenerational
caregiving. A Mattie J.T. Stepanek Pediatric Intensive Care Unit
is planned at Childrens National Medical Center in Washington,
where Mattie spent many months when his disease was in crisis.
In March, Stepanek accepted the Natalie Heineman Award on Matties
behalf from the Child Welfare League of America. The award honors
outstanding humanitarians and service to children.
The ambassadors mother served as a keynote speaker at the third
annual MDA Heartsongs Gala on Feb. 26 in Washington. The black-tie
gala raised an outstanding $837,000 for MDA research and service programs.
Matties Legacy
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A
portion of the proceeds from Matties sixth
and final volume of poetry will be donated
to the MDA
Mattie Fund. |
He wasnt just a kid, Katherine Sears said of her friend. He
was an angel, a gift sent from God to spread the
word of peace and
love.
Carl said, He left us all with marching orders, and I have a lot
of work ahead of me if I want to honor Matties memory.
At the end of the taping in Tucson, Stepanek recalled her sons
final speech, made at the 2004 Heartsongs Gala.
Mattie said, I am an ambassador, a messenger, a reminder that
what we are doing is giving the gift of hope Even if I am not here,
you must honor those who are committed to hope. You must gather
and celebrate the gift of life, and continue to be a part of the
effort.
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