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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

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StaffDara Alexander President and CEO dalexander@alsafl.org - ext. 101

Joey Adkins Director of Corporate Development jadkins@alsafl.org - ext. 114

Nancy Baily Chief Operating Officer nbaily@alsafl.org - ext. 105

Judie Benwick Care Coordinator, North Florida jbenwick@alsafl.org - ext. 112

Jessica Bianchi Care Coordinator, Southeast FL jbianchi@alsafl.org - ext. 122

Christine Bright Care Coordinator, Southwest FL cbright@alsafl.org - ext. 130

Lisa Bublinec DME/Respite Administrator lbublinec@alsafl.org - ext. 110

Aimee Freedman Care Coordinator, Northeast FL afreedman@alsafl.org - ext. 117

Donna Valin Ghioto Regional Director of Development dvghioto@alsafl.org - ext. 121

Kamden Kuhn Public Relations Coordinator kkuhn@alsafl.org - ext. 107

Patti PalmerEvents Coordinator ppalmer@alsafl.org - ext. 111

Rhonda RittenhouseCare Coordinator, Orlando rrittenhouse@alsafl.org - ext. 109

Robin SeeBookkeeper rsee@alsafl.org - ext. 104

Cheryl ScripterAdministrative Assistant cscripter@alsafl.org - ext. 113

Heran SisayCare Coordinator,Tampa hsisay@alsafl.org - ext. 103

Michelle TysonWalk Support Associate mtyson@alsafl.org - ext. 110

Cristina VidalEvents Coordinator cvidal@alsafl.org - ext. 131

Katie WaltersInternet Marketing Manager kwalters@alsafl.org - 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)

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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 lbublinec@alsafl.org.

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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“I am now the proud owner of a new vehicle with more options and accessories…

My hat goes off to the entire staff of Ride-Away. I’d like to take this opportunity to thank

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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