als access may 2010
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Newsmagazine for The ALS Association Florida ChapterTRANSCRIPT
1
A C C E S SA
Q U A R T E R LY N E W S M AG A Z I N E O F T H E A L S A S S O C I AT I O N F LO R I DA C H A P T E R
SAYING GOODBYE: LONG-TIME PRESIDENT DARA ALEXANDER RETIRES
PIECE BY PIECE TRAVELS TO D.C.
Walk 2010 Photos Inside
MAY 2010
2 3
StaffDara Alexander President and CEO [email protected] - ext. 101
Joey Adkins Director of Corporate Development [email protected] - ext. 114
Nancy Baily Chief Operating Officer [email protected] - ext. 105
Judie Benwick Care Coordinator, North Florida [email protected] - ext. 112
Jessica Bianchi Care Coordinator, Southeast FL [email protected] - ext. 122
Christine Bright Care Coordinator, Southwest FL [email protected] - ext. 130
Lisa Bublinec DME/Respite Administrator [email protected] - ext. 110
Aimee Freedman Care Coordinator, Northeast FL [email protected] - ext. 117
Donna Valin Ghioto Regional Director of Development [email protected] - ext. 121
Kamden Kuhn Public Relations Coordinator [email protected] - ext. 107
Patti PalmerEvents Coordinator [email protected] - ext. 111
Rhonda RittenhouseCare Coordinator, Orlando [email protected] - ext. 109
Robin SeeBookkeeper [email protected] - ext. 104
Cheryl ScripterAdministrative Assistant [email protected] - ext. 113
Heran SisayCare Coordinator,Tampa [email protected] - ext. 103
Michelle TysonWalk Support Associate [email protected] - ext. 110
Cristina VidalEvents Coordinator [email protected] - ext. 131
Katie WaltersInternet Marketing Manager [email protected] - ext. 115
Board of TrusteesMartin Koscso
Chairman
James Moroney
Past Chairman
Dara Alexander
President
Warren Nelson
Vice President & Treasurer
James Murphy, Jr., Esq.
Secretary
Hiram Green
Cynthia Holloway
Tom McLean
Richard Nimphie
Jack Ratcliffe
David L. Smith
A. Dewayne Standifer
Leland Talcott
Sandra Torres
ALS Association Florida Chapter
3242 Parkside Center
Circle
Tampa, FL 33619-0907
888-257-1717
813-637-9000
www.ALSAFL.org
Thank you.The ALS Association Florida Chapter treasures each and every financial gift we receive. The following acknowledgement lists persons and groups who contributed $250 or more to the organization since our last publication. Thank you to all who contributed.
Jose Arias, Francine Augello, Nina Bagby-Bishop, Dan Bailey, Robert G. & Mary Jane Bailey, Eric Barkett, Mary Barnes, Barry & Renee Honig Charitable Foundation Inc., BE&K Building Group, Carol Berc, Bisk Education, Inc., Jonathan Black, Booth & Cook, P.A., Dorothy A Bradshaw, Bright House Networks, Phyllis A. Brown, David Burch, Patrick T. & Linda L. Cahalan, Debra H. Callen, William Carroll, Marverine Cappiello (in memory of Joseph Cappiello), Blessed Trinity Catholic Church, Lidiette M. Celado, William Clark, Susan Ann Clyde, Larry Coburn, Albert & Jan Cohen, Cathy Collett (in memory of Betty Collet), Robert Colman, Mary Elizabeth Connolly, Karen Coolidge, Wiginton Corp, Mr. & Mrs. Erwin B. Coyner, Loretta Crites (in memory of Larry Crites), CSX Good Government Fund PacMatch, Elizabeth B. Crosby (in memory of Michael “Keith” Jones), Susie Curts, Roger M. Daubach Foundation (in memory of Roger Daubach), Brenda Davis, Daniel Diaz, Mr. & Mrs. Stuart Dix, Dave Dooley, Jenny Gore Dwyer (in honor of Pat Dwyer), Margaret Ann Edmiston (in memory of Michael “Keith” Jones), Stacey Ferrell, Finfrock Corporation, Mark W. Flynn, Arnold Fogelman, Myrna Fountain, Harley Frank, Lauren Nicole Frieder, Mr. Alfred S. Friedman, Florida West Coast G. C. Superintendents Assn., Mr. Melvin H. Gale, Tina M. Giger (in memory of Marvin C. Giger), Jimmy and Barbara Gill Jr., Bruce Goldenberg, Susan T. Goldenberg, Dr. Marc R. Greenbaum, Michael Greenberg, Sharon Greenberg, Roger Griggs, Mollie Anne Griswold, Julius Guttman, George Haag, Jack Haas, Bob Handley, David Hanson, Paul R. Hardaker, John C. Heard, David Heavenridge, Derek Hewitt, Alpha Beta Mu, Mr. Roy Hultberg, Pass International, Inc, Stephen Irwin, Alecia Young Jones (in memory of Michael “Keith” Jones), Brian Jones, Irving Joseph Charitable Trust, Elaine L. Katz, Michael & Kathleen Kilgore, Julie Kime, Leonard Kulick, Tom & Diane Kurinsky, Melvin Lazar, Heidi M. Lehman, Pearl R. Lehman, Michael Leon, Dr. Theodore Lerner, Lincoln High School (in honor of Jimmy Everett), Bruce Long, Amelia Rose Lubrano (in memory Toni Brummond), Robert Luongo ALS Fund (in memory of Robert Luongo), David W. Macey, Steve John Macionsky III, Helen Mackler, John C. Manis, Kimberly Allen Massey, Massey Services, Inc., William Maybrook, Damian E. McFadden, Tom D. McLean, Scott McLeod, Geraldine McPherson, William E. Meloy (in memory of Shirley Meloy), Robert Miller (in memory of Maureen Slattery Miller), John Mingus Jr., Scott E. Mollen, Dr. Elizabeth Anne Montavon, Sandra Montgomery, John F. & Sarah H. O’Toole (in memory of James Schwartz), Kevin Parry (in memory of Michael “Keith” Jones), Bruce & Patricia Peak, Paul Petruzzi, Dr. Paula Pettavino, Andrew Morton Pines, Paul Puckorius (in memory of Joyce Puckorius), Charles Newman, Arthur Remillard Sr., CoAdvantage Resources, Chesne Marie Robarts, Charlene L. Robinson, Mr. & Mrs. Martin Rosen, Rebecca Ross, RSC Latin Management Corp., Lynn Sapienza (in honor of Les Foster), James Schauweker Memorial Fund, Paul Schnitzlein, Michael Seith, Shumaker, Loop & Kendrick, LLP, Skanska USA, John Skelly, Ann P. Smedberg, David L. Smith & Joanne Urofsky, Stahl & Associates, Patricia Sullivan, Elizabeth Thompson, Leonard Thun, Lenard Thylan, Marsha Urmanski, Mark VanHaasteren, Albert Vierling, Bob Walker, Adam Weinberg, Norma Pasekoff Weinberg, Lynn Weinstein, Richard H. Weisinger, Eric Weiss, Wells Fargo Insurance Services, Mary Wiginton, Dennis Williams, Eli Winkler, Margaret Winship (in memory of Roger Winship, Lonnie Wohlan, Donna J. Wolski, Terry C. Wyman, Dr. Sheldon Z. Yessenow, Shiela Yessenow, Renee M. Zahery, Lynda Zur.
It was the summer of 1987 in Columbus, Ohio
when Dara Alexander got the news that would
impact the rest of her life. Her father, Darryl Mont-
gomery, had been diagnosed with ALS, a disease
her family knew very little about.
“I immediately knew this must be bad,” Dara
said. “After all, Lou Gehrig died didn’t he?”
With very few resources at her fingertips, Dara
made a trip to the library only to find a few books
that profiled the life of Lou Gehrig.
Fast forward 23 years.
Dara now sits at a desk in Tampa, Florida re-
flecting on the journey. Her father is gone, but the
impact of that remarkable diagnosis day remains.
She’s spent nearly half of her life on a search for
a cure – a mission to make life better for people
suffering with ALS.
And now, she says it’s time to pass the torch.
After thousands of days on the job, meeting
and befriending hundreds of patients, and visiting
more donors than she can count, Dara Alexander,
long-time president of The ALS Association Florida
Chapter, is letting someone else take the lead.
For six years after her father’s diagnosis, Dara
served as a lead volunteer and Board Chair for
The ALS Association Central and Southern Ohio
Chapter. In 1994, her dad moved to Florida to live
out his final days. Dara followed him there along
with her husband and two daughters. She served
along with her mom as a primary caregiver.
“I knew my mother was going to need help,”
Dara said. “My mom and I did the heavy lifting.
My grandmother cooked dinner every night, and
my daughters always wanted to help. So at young
ages, they did what they could like hold the straw
or change the TV channel. Caregiving became a
family affair.”
Soon after moving, Dara got involved in the
small group of patients and supporters that made
up what was called the Tampa Bay Chapter,
founded by ALS patient Ann Smith.
The small organization had no employees and
an annual budget of just $22,000. Dara served for
six years on the volunteer board, and then worked
for two full years without pay as executive director.
In 2003, the chapter had grown large enough to
make her position full-time.
The scene looks much different now. Under
Dara’s leadership, the grassroots group of patients
and caregivers became “the Florida Chapter” in
2001, expanding to serve patients across the entire
state. We now serve more than 600 patients with 18
employees and an annual budget of nearly $2 million,
which is used to help patients and fund research.
Dara’s passion for this cause has driven her to
make the Florida Chapter one of the largest and
most successful ALS Association chapters in the
nation. Current Chief Operating Officer Nancy
Baily will continue the work that Dara started.
Soon, Nancy will assume the position of president
and plans to lead this organization with the same
drive and passion that Dara exemplified.
“This cause is very near to me,” Dara said.
“I will still be fighting the fight against ALS, just not
as president.”
Dara AlexanderChapter President retires after 23 Years of ALS Work
“Dara’s passion for this cause has
driven her to make the Florida Chapter
one of the largest and most successful
ALS Association chapters in the nation.”
Dara’s contribution to the Florida Chapter and to the entire field of ALS will be remembered. We didn’t want to let her go without a quick reflection on the community of hope she has built and the legacy she leaves behind.
“It has been a
remarkable experi-
ence working under
Dara’s direction.
Dara has an amazing
presence that pro-
vides individuals with
a feeling of comfort.
Her knowledge, skill,
determination, and
drive fuels those
around her to work
to their full potential.”
~Jessica Bianchi
“I always think of
Dara and the Chapter
as one and the same.
She has put so much
of her heart and
soul into her work
that even when she
leaves, I think a part
of her will still be right
there in the office.
When various situ-
ations come up, I’m
sure we will find our-
selves asking, ‘What
would Dara do?’”
~Judie Benwick
“Throughout my
work experience,
I have seen many
different styles of
leadership, and
I admire Dara’s
leadership skills the
most. She always
leads by example
and with respect.
She has never been
too busy to share
her knowledge with
those that want to
learn. I will miss her
very much.”
~Lisa Bublinec
“It has truly been an
honor working with
someone that has
such a passion for
what we do. Having
a president that has
had the personal
experience with
ALS, I think, has
made a tremendous
difference in how the
patients and families
see us as an organi-
zation.”
~Donna Valin Ghioto
“I am fairly new to The ALS Association, but
in the short time that I have been a part of this
team, I have learned one thing about Dara
Alexander… when she pokes her head around
the corner and asks you to step into her
office for a moment so that she can show you
something… what she really means is bring
your coffee, come in, and get comfortable…
because you’re going to be in there for a while.
But I must say I never leave her office without
knowing that she has imparted upon me some
piece of valuable information to make my job
easier and more efficient. It has been an honor
to work with someone that I respect not only
for all of her many accomplishments, but also
for the wonderful person that she truly is.”
~Cheryl Scripter
“My wife, Sandy, and I have found few bright
spots in living with ALS. The ALS Associa-
tion Florida Chapter has been the brightest
of those spots and Dara Alexander and
Christine Bright are just two from the chapter
that embody the compassion, dedication
and expertise that fuels this brightness. Dara
has joined a group of lifelong leaders that
it has been my honor and pleasure to have
experienced. We hope that she will remain a
part of our lives.”
~Chuck Hummer
“Dara has qualities every leader aspires to
attain. She is a remarkable woman with
vision, dedication, integrity, astuteness,
creativity, and compassion. Our Chapter is
greatly indebted to her for all she has done.”
~Heran Sisay
6 7
A LS patient Steve Franks has his bags
packed, and he’s ready for a road trip.
Steve has already traveled over 7,000
miles to more than 20 locations in Florida hauling
the Piece by Piece display in a trailer behind his
truck. But there’s one trip Steve has been looking
forward to most. The Piece by Piece Awareness
Campaign is making its debut in Washington, D.C.
The powerful exhibit of 150 mannequins, which
represents people who have been stolen “piece
by piece” by ALS, will appear in Washington, D.C.
for The ALS Association’s National ALS Advocacy
Day and Public Policy Conference. Steve hopes
the display will grab the attention of the general
public and lawmakers who can make a difference
for people living with ALS.
Hundreds of ALS patients, families, and
advocates are making the trip to Washington for
National ALS Advocacy. The Piece by Piece
exhibit will complement their advocacy efforts,
giving lawmakers a gripping image of the devasta-
tion caused by ALS.
Piece by Piece is the largest ALS awareness
campaign ever launched in the state of Florida.
The truth of the gripping message - “Lou Gehrig’s
Disease is stealing our loved ones piece by piece”
- has grabbed the emotions of families affected
by the illness and given them great hope that
this campaign will continue to create awareness,
which is so badly needed for the ALS community.
PIECE BY PIECE | THE DEBUT IN WASHINGTON, D.C.
There’s one trip Steve has been
looking forward to most. The Piece by
Piece Awareness Campaign is
making its debut in Washington, D.C.
Steve with volunteers setting up the display in Tampa FL
D.C. Piece by Piece DisplaysTHE NAVY MEMORIALSunday, May 9, 2010 – 9am - 5pm 701 Pennsylvania Ave. Northwest
CAPITOL REFLECTING POOL PLAZATuesday, May 11, 2010
10:30am – 6:30pm
3rd Street SW (between Maryland Ave. SW and
Pennsylvania Ave. NW)
8 9
From May 9th through 11th, ALS advocates
from around the nation are joining in Washington
D.C. for National ALS Advocacy Day and Public
Policy Conference. This powerful annual event
has helped us to accomplish significant victo-
ries for people with ALS, from eliminating the
24-month Medicare waiting period to more than
tripling funding for ALS research. But more must
be done! That’s why patients, friends, and families
are playing an active role in advocacy efforts that
can and do make a difference.
2010 Public Policy Priorities1. Appropriate $10 million to continue the
National ALS Registry at the Centers for
Disease Control and Prevention. The Admin-
istration and Congress have made the establish-
ment of a national ALS patient registry a top prior-
ity through the enactment of the ALS Registry Act
in 2008 and by appropriating funding to develop
and implement the registry. However, increased
funding is necessary in fiscal year 2011 to fully
implement the registry, to allow people with ALS
to self-enroll, and to enable the CDC to coordi-
nate with other federal agencies to identify ALS
cases through existing databases. The implemen-
tation of this registry will aid researchers as they
search for biomarkers and risk factors and contin-
ue clinical studies that identify new treatments for
the disease.
2. Appropriate $15 million to continue the ALS Research Program at the Depart-ment of Defense. Military veterans, regardless
of branch or era of service, are two times more
likely to die from Lou Gehrig’s Disease than those
who have never served. In order to support our
nation’s military heroes in the fight against ALS,
Congress and the Department of Defense estab-
lished the ALS Research Program in fiscal year
2007. While Congress has continued to appropri-
ate funding for this program, the current funding
level will only be able to support three or four
research projects, when over 90 programs have
requested funding. By appropriating $15 million,
Congress can continue this vital program and take
steps to ensure that our nation continues to fight
for our veterans just as they fought for us.
This powerful annual event has helped us to accomplish signifi-cant victories for people with ALS, from eliminating the 24-month Medicare wait-ing period to more than tripling funding for ALS research.
National ALS advocacy dayFrom your house… to the people’s house
10 11
LISSA MOUNCE designs jewelry that allows her to express her cre-
ativity and raise awareness of ALS. Lissa, who has
lived with ALS since November 2007, creates neck-
laces made of colorful stones and beads, then uses
these pieces to gather donations that benefit the
fight against ALS.
The Florida Chapter has proclaimed Lissa and
her husband, Richard, formerly a banker with JP
Morgan Chase, the family that best exemplifies the
spirit of “ALS Across America” for Florida during
ALS Awareness Month in May. The “ALS Across
America” national campaign recognizes courageous
individuals with ALS and their caregivers who are
role models to people with Lou Gehrig’s Disease.
These special individuals reflect the spirit of the
organization as they make a positive difference in
their community by expanding awareness of ALS
and embodying the spirit of living life to the fullest.
BEADSOF HOPE
ALS Patient Designs Jewelry with a Purpose
Lissa has now raised more than $20,000 for the
fight against ALS by creating items of jewelry and
using them as gifts for people who make donations
to The ALS Association. She says she wanted to do
something that would not only raise money but also
create awareness about the disease.
Lissa began making jewelry when ALS kept her
from participating in her favorite hobby, tennis. She
came up with the idea to work with her friends to
make necklaces that they would give to people who
made a contribution to the chapter.
Eventually, Lissa lost the ability to string together
the beads due to ALS. She now uses a computer-
Lissa, who has lived with ALS since No-vember 2007, creates necklaces made of colorful stones and beads, then uses these pieces to gather donations that benefit the fight against ALS.
“
“
assisted speech device that enables her to tell her
husband what types of beads to purchase. Once
the Mounces have the beads available for assembly,
her friends gather at her house to string the beads
and create the final piece of jewelry. Lissa has
parties where people will come to her and Richard’s
home, look at the jewelry, and often make a donation
of $100 or more to the chapter.
Eventually, Lissa lost the ability to string together the beads due to ALS. She now uses a computer-assisted speech device that enables her to tell her husband what types of beads to purchase.
The Mounces, who have two grown children,
ages 26 and 23, spent 23 years of their life together
overseas as part of Richard’s career. They have
lived in Jordan, London, England, Seoul, South
Korea, Hong Kong, and Tokyo, Japan.
Lissa will continue to make jewelry during ALS
Awareness Month in order to raise money, and ulti-
mately raise awareness about the disease to anyone
who sees her necklaces.
The Florida Chapter has proclaimed Lissa and her husband,
Richard, the family that best exemplifies the spirit of
“ALS Across America” for Florida during ALS Awareness
Month in May.
12 13
Robert Baron, Land O’ Lakes
Eugene Blair, The Villages
Toni Brummond, Land O’ Lakes
Marguerite Cain, Spring Hill
Mark Christian, Riverview
Donald Crews, Land O’ Lakes
Josef Day, Palm Beach
Nancy Doty, Cape Coral
Richard Ekmanian, West Melbourne
Tammy Gomez, Tallahassee
John Grant, Oakland Park
Deborah Harris, Gainesville
Mona Howard, Winter Haven
Richard Howe, West Melbourne
Leslie Huddleston, Daytona Beach
Doris Kipilman, Plantation
Richard Kraus, Zephyrhills
Kathleen LeBarron, North Ft. Myers
Pierrette Moreau, Bonita Springs
Ezra Mount, Fort Walton Beach
Gloria Parrott, Bushnell
Lucy Perez, Miami
Jerry Porreca, Orlando
Kim Prazych, Palm Coast
Gene Robarts, Tampa
Myrtle Scott, Jacksonville
Hampton Smith, Tallahassee
Leonard Tango, East Setauket, NY
Mary Wilson, Tampa
Raymond Wolski, Parrish
Gerald Wright, Defuniak Springs
Katherine Wroubel, Middleburg
In Memoriam - We extend our sympathy and continued support to the family and friends who have recently lost their loved ones to ALS. We remember their courage in living and keep their spirits alive in our memories and hearts.
Isis Pharmaceuticals, Inc. has initiated a Phase
1 study of ISIS-SOD1Rx in patients with an inher-
ited, aggressive form of Lou Gehrig’s disease also
known as familial ALS. Approximately 20 percent
of all familial ALS cases are caused by a mutant
form of the gene, SOD1. The ALS Association and
the Muscular Dystrophy Association are providing
funding for the development of ISIS-SOD1Rx.
ISIS-SOD1Rx is an antisense drug designed to
inhibit the production of SOD1. Antisense tech-
niques are used to deactivate disease-causing or
undesirable genes, so that they cannot produce
harmful or unwanted proteins.
“This therapy will be the first treatment for ALS
that is specifically aimed at the target, SOD1,
known to cause ALS. The development of new
treatments for ALS is an extremely challenging
and costly process. The ALS Association has
been pleased to co-fund this study and partner
with Isis on this extremely promising treatment
approach. It is only through the support of our
generous donors that this type of advancement is
made possible,” commented Lucie Bruijn, Ph.D.,
Chief Scientist, The ALS Association.
The Phase 1 study of ISIS-SOD1Rx is a place-
bo-controlled, dose-escalation study designed to
assess the safety and tolerability of ISIS-SOD1Rx
in patients with familial ALS caused by muta-
tions within the SOD1 gene. The study consists
of four cohorts with eight patients each. In this
Durable Medical Equipment Needed
If you have medical equip-
ment that you no longer need,
we can put your unused items
to work helping ALS patients in the community.
Our loan closets around the state house impor-
tant medical equipment that is vital to the care of
ALS patients and can help to improve their quality
of life. We’ll be sure to find a good home for your
unused equipment.
For more information about receiving or donat-
ing medical equipment, contact Lisa Bublinec at
888-257-1717 ext 108 or [email protected].
Manual wheelchairs
Power wheelchairs
Lightweight transport chairs
Lift chairs
Transfer boards
Patient lifts
Bath benches
Head mouse systems
study, ISIS-SOD1Rx will be administered in the
spinal canal using an external pump to deliver the
drug directly into the spinal fluid during a single,
12-hour infusion. The study will be conducted in
multiple centers within the United States.
“It is evident that certain forms of familial ALS are
related to mutant forms of SOD1. Therefore, the
selective inhibition of SOD1 production could provide
a way to improve the outcomes of these patients with
ALS,” said Timothy Miller, M.D., Ph.D., Assistant
Professor of Neurology at Washington University
School of Medicine and Director of the Christopher
Wells Hobler Laboratory for ALS Research at the
Hope Center for Neurological Disorders.
“ISIS-SOD1Rx is our first antisense drug to
enter clinical trials to treat a neurodegenerative
disease, and our first antisense drug to be admin-
istered directly to the central nervous system.
Based on our earlier preclinical studies, we
believe that ISIS-SOD1Rx could offer an effective
treatment for patients with familial ALS,” said C.
Frank Bennett, Ph.D., Senior Vice President of
Research at Isis Pharmaceuticals. “This study is
the first step in demonstrating the applicability of
antisense drugs to treat severe neurodegenera-
tive diseases. We also continue to advance our
earlier-stage programs toward human studies.”
Visit www.clinicaltrials.gov to learn more about
this and other ALS trials.
First ALS Patient Receives Antisense Treatment in Clinical Trial
Our loan closets currently need the following items:
14 15
This spring, we took big steps in the battle against Lou Gehrig’s
Disease because of your efforts in the 2010 Walk to Defeat ALS™
events. Six walks took place around the state with nearly 6,000
walkers, and many more of you participated in a virtual walk
online. Thank you for your support, fundraising efforts, and
dedication to this cause. Because of you, we can continue to work
toward our ultimate vision – a world without ALS.
SCRAPBOOK | THE 2010 WALK TO DEFEAT ALSTMElla’s Fellas walk with 30 team members!
Steve Franks and Linda Snyder, our all-star volunteers.
Evan Aversa sports his team t-shirt from Team Larry Fein.
Walkers take off at the Straz Center Riverwalk in Tampa.
Tampa Mayor Pam Iorio poses with a walker.
Members of Dunn&Co.’s walk team, who raised over $3,000.
16 17
MATTWHITESPEAKING IN SILENCE
The inspira-tional speech the Butler Bulldogs will never forget.
After suffering with ALS for 10 years, the Butler
University alumnus who now lives in Cape Haze,
Florida traveled to Indianapolis to watch the Butler
Bulldogs in the NCAA Final Four and inspire the
basketball players with a speech Matt had written
for the special opportunity. The trip came courtesy
of an anonymous donor who paid the expenses for
Matt to travel by Learjet to Indianapolis.
ALS has robbed Matt of his ability to move and
speak, so he prepared the speech on his com-
puter, using a special head mouse device which
allows him to move his eyebrows and forehead to
direct the cursor.
who read it for him before the Bulldogs took on the
Michigan State Spartans in the Final Four.
White made a similar speech to the Butler Bull-
dogs in 2007, when the team versed Florida Gulf
Coast University. White’s motivating writing deliv-
ered just as much punch as it did in 2007, and
the Bulldogs went on to defy the odds, beating
Michigan State, 52 – 50. Just two days later, Matt
White watched as the Butler Bulldogs took on
Duke University in the nail-biting championship
game. The Bulldogs lost by just two points in the
final seconds of the game.
Butler had advanced farther than many expect-
ed, and Matt White traveled home with great pride
in his alma mater. Matt’s courageous attitude and
passion to live fearlessly grabbed the attention
of the nation, raising awareness about ALS and
showing the public the urgent need to fight back
against such a devastating illness. Journalists from
Florida, to Indianapolis, to New York followed
Matt’s plight, and thanks to his heroic journey
and inspirational speech, millions of people now
understand the devastating effects of ALS. Matt’s
story was featured by such news outlets as the
New York Times, New York Post, ABC World
News, and also during the CBS broadcast of the
game, just to name a few.
While ALS has silenced Matt’s voice, his influ-
ence has resonated in the hearts of millions, and
he continues to persevere, living by the same
words with which he inspired the Butler Bulldogs.
“You have tremendous
resolve to survive, to keep
moving on, regardless of
the obstacles you face,”
Matt wrote. “You also
live in the moment. Never
looking back or too far
forward, you deal with,
only what is in front of
you and you move on.”
In April, Matt White, made the journey of a lifetime – a trip that would fulfill a personal dream, captured in photos, and document-ed by journalists across the country.
Matt and Shartrina being interviewed by journalists in Venice, FL
He then delivered the pre-game speech through
his wife, Shartrina,
18 19
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Margaret at the front desk, Richard who fitted me, Mike and Dave for making the
purchase possible, and of course Jim who runs a top notch business.” – Tim Wolfe
We carry a wide selection of new and pre-owned mobility vehicles and
equipment. We are State licensed automotive professionals and provide trade in
services, financing as well as extended warranties. Ask us about accessible van
rentals too!Don’t waste valuable time and
money with amateurs. Call the
professionals today!
Served in the Military?Ask us about recent updates
in VA benefits!
HDS VANS & MOBILITYJACKSONVILLE, NORTHAND CENTRAL FLORIDA
& THE FIRST COAST
877-HDS-VANS / www.hdsvans.com
AUTO MOBILITY SALESLAKE WORTH,
POMPANO, MIAMI& THE GOLD COAST
1-888-770-8267 / www.automobilitysales.com
Mark Your CalendarsThe Ride to Defeat ALS (formerly Tour de Vie) December 11, 2010 Walsingham Park Largo, FL
Visit ALSAFL.org often for updates on this event you don’t want to miss!
Support Groups
Join us at an upcoming support group to find practical advice on day-to-day living with ALS and a safe place to express your concerns. Everyone is welcome.
Boynton Beach Daytona-Ormond Beach Fort Myers Gainesville Jacksonville Leesburg Manasota Melbourne Naples
Ocala Orlando Pensacola Tallahassee Tampa Treasure Coast/Stuart Weston Vero Beach
Visit www.ALSAFL.org or call us at 888-257-1717 for support group dates and directions.
NONPROFIT ORG US POSTAGE
PAIDTAMPA FL
Permit No 2910
3242 Parkside Center Circle Tampa, FL 33619-0907
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