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

MISSION ACCOMPLISHED

THE JOURNAL OF OUR JOURNEYS

MUST-HAVE HURRICANE CHECKLIST FOR PALS

NEW RESEARCH STUDY NEEDS PARTICIPANTS

AUGUST 2010

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StaffNancy Baily President and CEO 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, MSW Patient Services Director 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

Robin SeeBookkeeper rsee@alsafl.org - ext. 104

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

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

Patricia Stanco, MHSCare Coordinator, Southwest Florida pstanco@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

Nancy Baily

President

Warren Nelson

Vice President & Treasurer

James Murphy, Jr., Esq.

Secretary

Carleton “Tim” Cummings

Hiram Green

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. Because of your support, we are able to fund needed research and provide valuable patient services to individuals with ALS.

William Becker

Ric & Dorothy Bradshaw (in memory of George Smith)

Richard & Carol Brier (in memory of Kevin F. Murphy)

Robyn Anisa Cameron (in memory of Steven D. Cameron)

William Childers (in honor of Jimmy Everett)

Community Foundation of Tampa Bay

D’Agostino Foundation

David C.G. Kerr Memorial Fund (in memory of David Kerr)

Pam Dunlap (in memory of Jeff Dunlap)

Jacquelyn W. Dupree (in memory of Emily Wilbert)

Phi Delta Theta

Mary Futo (in memory of Miriam E. Moons)

Amy Gomez (in memory of Tammy Gomez)

Joanne Gonseski

Gary Herbein

Tanya L. Hollady (in honor of Jimmy Everett)

Sally B. Horner

Joseph Alexander Foundation, Inc.

Kraft Food Foundation (in memory of Edith Kravitz)

Debbie Kraus (in memory of Richard Kraus)

Liberty Baptist Church (in honor of Billy Dyle)

Harvey A. Mackler (in honor of Scott A. Mackler, M.D., Ph.D.)

Minto Foundation, Inc.

G. & Stephanie Mitchell

Tim & Wendy Owen (in memory of Hamlin Larry Ballowe)

Jeptha Pope

Katherine Pryor

Jerome J. Saczynski

Scott-McRae Group, Inc.

Art & Nancy Shults (in memory of Arthur Shults)

Dewayne Standifer

Marie E. Turianski (in memory of Gerald Turianski)

Mary Tysenn (in memory of Jeffrey Tysenn)

John & Phyllis Van Hoff (in memory of Sue Allen)

Richard Zabak

Judy Zahn (in memory of Milton Bradley)

The Journal of Our JourneysIn May, a group of ALS Association staff and volunteers, led by inspirational patient,

Steve Franks, traveled to Washington D.C. with the Piece by Piece Tribute Display. We

hoped to use the powerful exhibit of 150 mannequins to draw attention to National ALS

Advocacy Day and the devastation caused by ALS. Looking back on our journey, we cer-

tainly accomplished our mission, and we made so many memories along the way.

DAY 1 (FRIDAY)

All hands were on deck as we began

our journey from sunny Tampa, Florida to

what we would find out was a very windy

and cold Washington, D.C. We began

our journey after a hearty breakfast at

Cracker Barrel. With snacks, maps, and

150 mannequins on board, we journeyed

up the East Coast via I-95. Our caravan

included a white rental van, Steve’s new

handicapped conversion van (purchased

from another ALS patient), and the infa-

mous Piece by Piece trailer. We skipped

lunch to save time, grabbed dinner in

South Carolina, and then stopped for

sleep in Fayetteville, North Carolina after

a long day of driving.

DAY 2 (SATURDAY)

After a good night’s rest, we began

our journey again bright and early. A

slight detour held us up north of Rich-

mond, Virginia where I-95 had been

closed due to an accident. We arrived

in Washington around 5pm and met

up with more extraordinary Florida vol-

unteers who had flown in just for the

Piece by Piece Display - Linda Snyder

and her sister, Diane Altman, along with

Pat Franks (Steve’s mom).

PIECE BY PIECE | OUR TRAVELS TO D.C.

Piece by Piece trailer arriving

to Capitol Hill.

4 5

DAY 3 (SUNDAY)

7:30 am Our gang gathered

at the U.S. Navy memorial to

begin our meticulous mannequin

set up routine, which includes

heavy lifting and lots of measur-

ing. Thanks to the help of even

more volunteers who met us

Sunday morning (Kasey Sheffer

& family and Cathy Collet whose

mother’s name is represented in

the display), we completed the

process in just over an hour. Our

national office provided details

about the exhibit to those attend-

ing National ALS Advocacy Day

and Public Policy Conference.

9:30 am The weather became

quite windy, and some of the

mannequins began blowing over.

A little wind never stopped our

team anyway. Despite breaking

a few of our mannequin forms,

we continued to pick them up

and wish the wind away!

2:00 pm President of The

ALS Association (national), Jane

Gilbert, visited the Piece by

DAY 5 (TUESDAY)

7:30 am Once again, the best

volunteers in the world arrived for

mannequin set up. Bundled up in

our anti-Florida weather clothes,

we placed 150 mannequins in

front of the Capitol building and

hoped for the temperature to rise

above 50 degrees!

9:00 am Enter CNN! Steve

Franks and Maryland PALS Al

Herman were interviewed by

a CNN camera crew and pro-

ducer! CNN then followed Al

Herman into the meetings with

his congressional leaders to ad-

vocate for funding of the ALS

Registry at the CDC and the

ALS research program at the

Department of Defense.

12:00 pm And the rain began.

We knew it was coming, so we

quickly gathered all of our bro-

chures, postcards, and buttons

and ran for cover. Steve made the

decision to leave the display out in

the rain. After all, we only had one

shot at Washington, D.C. On-

lookers still observed the gripping

exhibit with umbrellas in hand.

Cathy Collet and Susie Franks

braved the rain and cold to talk to

onlookers about the need for ALS

awareness. Meanwhile, other

Florida advocates met with con-

gressional leaders in the capitol

buildings to encourage lawmak-

ers to request appropriations in

support of ALS research.

3:00 pm Despite the rain,

Senator Murkowski of Alaska

arrived with Congressional News

cameras. She observed the man-

nequin honoring PALS Pat Dwyer

whom she knows personally. She

Piece Display along with some

national trustees. NBC Wash-

ington also arrived to interview

Steve Franks and his mom for a

Mother’s Day feature on fighting

Lou Gehrig’s Disease.

5:00 pm Let the tear down

begin. It had been a fabulous day

for ALS awareness. A steady

stream of curious onlookers wan-

dered through the display all day.

We gave out information, edu-

cated the public about this awful

disease, and Cathy Collet served

on “button patrol,” giving every

visitor a large button reading: “Stop

Body Theft.” Even more faithful

volunteers who had flown in from

Florida joined us for tear down that

evening. Thanks to Rick Fergu-

son, Cindi Whitmer and family, we

were packed up before we knew

it. Exhausted, we retired to our

hotels to recuperate for more hard

work ahead.

DAY 4 (MONDAY)

Dara and Kamden spent much of

the day obtaining parking permits

met the Franks family and mingled

with other Florida Chapter leaders

and volunteers, expressing her

support in the fight against ALS.

6:30 pm Tear down time. We

removed photos of loved ones

from the wet shirts and carefully

packed them in plastic contain-

ers to be laundered when we got

home. Volunteers packed all of the

items back into the trailer for the

journey home. The sun was setting

for our exhibit at the capitol reflect-

ing pool. Steve and Susie mingled

with other ALS patients at the J.W.

Marriott and attended meetings

for The ALS Association’s Public

Policy Conference. Other volun-

teers spent the day sightseeing.

We continually checked Tuesday’s

forecast which called for rain!

and our crew looked back on the

day with satisfaction. We had

taken another great stride in the

fight against ALS. More people

knew about the urgent need for a

cure. Mission accomplished!

DAY 6 (WEDNESDAY)

Round 1 of our gang journeyed

back to sunny Florida, while the

Franks family stayed in DC for

a few extra days to sightsee.

Our trip was not nearly as fun

as it was when we followed the

Franks family. We arrived home

sweet home on Wednesday night

knowing we made memories that

will last a lifetime and hopefully a

difference that will last even longer!

MEDIA ALERT

Our trip to D.C. created

tons of awareness and

brought about several news

stories from local and na-

tional media outlets. To

view the stories, visit the

press room at www.Steal-

ingPieces.org

On Sunday, the Piece by Piece display stood in front of the U.S. Navy memorial where conferece attendes and tourists visited the display.

Piece by Piece display stood in front of the Capitol building.

CNN interview with Steve Franks

6 7

1Call the Office of Emergency Management

in your county to register for special assis-

tance and to find the nearest special needs

shelter to you.

2 Send copies of important documents to

your out-of-town contact person.

3 Enroll in your electric company’s “priority

reconnection service,” if available.

4 Prepare a medical information list that

includes:

• Names and contact information for

medical providers

• Health insurance information

• Medications you use

Researchers are looking

for 250 people to participate in an ALS biomarker

study. Participants must be at least 30 years of

age, be willing to have blood and cerebrospinal

fluid (CSF) drawn for the study, and participate in

follow up phone calls and visits approximately every

6 months.

The ALS Association has funded several studies

to support efforts to identify biomarkers: in particu-

lar, a collaboration between investigators at Univer-

sity of Pittsburgh, Massachusetts General Hospital

and Metabolon (a diagnostic products and services

company) to identify signatures for the disease.

Initial studies identified potential markers. Most of

these biomarkers have been discovered in the CSF.

It is crucial to repeat these findings in a much larger

number of samples to better evaluate the ability

of the biomarkers to accurately predict ALS. We

must also determine if these biomarkers can not

only be recognized in the CSF but also detected in

the blood. Some of these biomarkers may also help

predict treatment outcome.

Continued funding through The Association and

more recently the National Institutes of Health (NIH)

is enabling the collection of CSF and blood from

250 individuals with ALS, suspected of having

ALS or another motor neuron disease, and healthy

individuals. Dr. Robert Bowser from the University

of Pittsburgh and Dr. Merit Cudkowicz from Mas-

sachusetts General Hospital are the leaders of this

investigation. The grant application for this study

won one of the prestigious NIH Challenge awards

funded from the American Recovery and Reinvest-

ment Act of 2009 (ARRA stimulus funds).

The drive to more rapidly develop effective

therapies for ALS highlights the importance of early

disease detection and ability to monitor disease pro-

gression. Clinical measures of muscle and nerve

function are currently used to both diagnose ALS

and follow disease progression. During the past

decade, tremendous advancements have occurred

in the discovery of a variety of biomarkers for the

diagnosis and treatment of many human diseases.

Biomarkers are defined as any characteristic that

can be accurately measured in the body and used

as an indicator of normal or disease processes.

Biomarkers may be genetic (such as SOD1

mutations for a familial form of ALS), proteins or

products of metabolism.

Currently, 30 medical centers across the U.S. are

participating in this study. They are collecting CSF

and blood samples from people with ALS, people

with neurological disorders that have similar clinical

features to ALS, including hereditary spastic para-

paresis (HSP), primary lateral sclerosis (PLS), pure

lower motor neuron (LMN) syndromes, multiple

sclerosis (MS), and people with no known neuro-

logical disorders.

All samples collected will be placed in a sample

repository for use in future ALS research studies.

The sample repository is available for use by ALS

researchers and scientists around the world to

better understand the disease. The samples from

this repository have been provided already to six

different scientists searching for biomarkers in ALS.

Participants in this study will help us to better under-

stand, prevent, diagnose or treat ALS.

HURRICANE SEASON | PREPARATION FOR PALS ALS BIOMARKERS CLINICAL STUDY | PARTICIPANTS NEEDED

• Adaptive and support equipment you use

• Allergies and sensitivities

• Special care instructions

• Instructions for getting you out of your

home, if necessary

• The best way to communicate with you

if you have communication difficulties

5Prepare a Disaster Supply Kit.

• Extra battery for a motorized wheelchair

or scooter

• Patch kit, can of seal-in-air product,

inner tubes for a motorized wheelchair

or scooter with inflatable tires

• Lightweight manual wheelchair for

backup

• Converter for your communication

device

• Adaptor kit if you are using a BiPAP

Hurricane season is in full swing, and that means it’s time for people with ALS to get

equipped for a worst-case scenario. Complete the PALS hurricane to-do list and be prepared for anything.

Need more help getting prepared?

Visit www.FloridaDisaster.org or contact your ALS Association care coordinator.

The help of the ALS community is needed to build this ALS sample repository. To learn more about participating in this study, please contact:Mayo Clinic Jacksonville: Amelia Piazza-

Johnston or Pamela DeSaro - 904-953-6915

University of Miami: Donald Koggan -

305-243-7424

For participating medical centers in other

states, visit www.ALSA.org

8 9

THE RIDE TO DEFEAT ALS | RIDING ON FOR ROZ

A t 66 years of age, ALS had taken her

words and typical quick-witted replies,

but her eyes did the talking. Full of life,

love, and candid expression, Rosalind Jeffrey, a

former model and actor, had a smile that lit up the

room and a stubborn spirit that did its best to fight

the inevitable progression of ALS. She was still

battling courageously when she passed away on

May 20, 2010. There were a few times we saw

her cry – each while gazing at her daughter Shelly

Reale. Perhaps they were tears of appreciation,

fulfillment, or love—maybe tears of hope, which

Shelly had granted to Roz and hundreds of pa-

tients like her.

It was just last November that Shelly launched

Florida’s first-ever cycling event to fight Lou Geh-

rig’s Disease. She did it to honor her mother’s

journey with ALS and give meaning to her suffer-

ing. More than 200 riders gathered at the event

that honored Roz’s life and raised over $53,000

for hundreds of victims suffering with ALS.

The cycling event, formerly called Tour de Vie,

has forever changed the way many people view

CHOOSE YOUR ROUTE AND REGISTER TODAY

December, 11, 2010

Walsingham Park, Largo, FL

(Tampa Bay Area)

www.FloridaRidetoDefeatALS.org

5-MILE FAMILY FUN RIDEA beautiful 5-mile loop through Walsingham

Park’s paved and shaded trails.

Registration Fee: $20 - Fundraising Minimum: $150

(not required for participants 15 and under)

25-MILE RIDEWind through lightly-travelled streets, beach-

side roads, paved trails, and residential areas

featuring some of Tampa Bay’s most beautiful

homes. About half of this route takes place on the

beautiful Pinellas Trail.

Registration Fee: $35 - Fundraising Minimum: $150

METRIC CENTURY (62.5 MILES)A 100K ride for our cycling enthusiasts. Takes

riders through lightly-travelled streets, beachside

roads, paved trails, and residential areas.

Registration Fee: $35 - Fundraising Minimum: $150

the deadly illness,

ALS. Although Roz is

gone, her memory

lives on, and so does

the ride she inspired.

The cycling event

is now called the

Ride to Defeat ALS.

It’s the same great

event, just a different name to get our mission

across plain and simple – defeating ALS!

Join us at the 2010 Ride to Defeat ALS as

we remember the loved ones we’ve lost, like

Roz, and ride on to provide hope for those still

fighting. The Ride to Defeat ALS is a one-day

cycling event designed to appeal to riders of

any age or level of experience. Every partici-

pant can count on support from start to finish

with crewed rest stops, SAG vehicles, and

a safety team. Afterward, we’ll welcome you

back with finish line festivities like entertain-

ment, complimentary massages, a healthy

lunch, and great demos.

Shelly and Rosalind

10 11

Sue Allen, Jensen Beach

Annetta Austin, Tampa

Brian Badger, Jacksonville

Hamlin Larry Ballowe, Jacksonville

Elaine Bazzo, Orlando

Anita Beaton, Bonita Springs

Janice Brenneman, Gainseville

Robert Browning, Pensacola Beach

Steven Cameron, Lakeland

Pauline Castro, Tampa

Debbie Creech, Oak Harbor

Vida Cunningham, Lauderhill

Lynn Ferguson, Bradenton

Georgia Fox, Maitland

Cheri Giebert, Jacksonville

Gerald Gordon, Leesberg

Jacob Hadar, Aventura

Burton Hallman, Parkland

Julius Hargis, Cocoa Beach

Michael Higginbotham, Fernandina

Joe Higgins, Zephyrhills

Frances Hill, Pensacola

Richard Huff, Zephyrhills

Warren Humphries, Tampa

Leo Ison, Boca Raton

Rosalind Jeffrey, Gulfport

RoseAnn Jonas, Naples

John Lipari, Fort Myers

Leela Manchepalli, Tampa

Laura McLester, West Palm Beach

Omar Nuwayhid, Oviedo

Karen Osborne, Titusville

Helen Parker, Stuart

Richard Pascarella, Fort Myers

Delores Robinson, West Palm

Rosalba Rodriguez, Vero Beach

Norberto Rosado, Holiday

Nick Ruys, Bartow

Larry Sargent, Apopka

James Shaw, Amelia Island

Arthur Shults, Jacksonville

Helene Soucy, Fort Pierce

Michelle Spence, Ocoee

Peggy Spradley, Saint Augustine

Thomas Stevens, Middleburg

Howard Swearingen, Glen Saint Mary

Jeannette Theriault, Dundee

Jeffrey Tysenn, Satellite Beach

Richard Walker, Englewood

Vina Jane Walter, Spring Hill

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.

May 25, 2010 was named “Tip Graham Day” in

Jacksonville – an opportunity to honor the special

ALS patient and long-time Jacksonville resident,

Henry H. “Tip” Graham, Jr., who has contributed

so much to that community. A gathering of family,

friends, and co-workers looked on as Jacksonville

Mayor John Peyton read the proclamation in the

Scott-McRae Group corporate headquarters.

Scott-McRae Group Co-Chairman Tip Graham

was diagnosed with ALS in 2007. Since then,

the dedicated civic leader has become a gener-

ous supporter of The ALS Association Florida

Chapter, donating office space to allow us to

open our first office in North Florida. Tip was

also the inspiration behind a charity campaign for

Duval Dealers. The Jacksonville car dealerships

donated $25 for every car sold between Novem-

ber 2009 and February 2010, ultimately raising

over $35,000 for the fight against ALS.

“Tip has a knack for finding the positive at-

tributes in people and places even when they are

diamonds in the rough,” Monica Hillin, Scott-

McRae Advertising, VP of Human Resources,

said. “Through his passion and leadership, he

has been successful in coordinating people, com-

panies, and the community to accomplish great

things. Once he believes in something he person-

ally takes it upon himself to be the guiding force.”

The proclamation naming May 25th “Tip

Graham Day” honored Tip’s service to the

Northeast Florida community through his pro-

Many people would like to support The ALS Association with a large gift but feel they cannot afford to make such a committment today. A bequest by will or revocable trust can be tailored to complement your personal lifestyle and financial goals and also support the fight against ALS.

For more information on making a gift through your will or trust, go to www.alsa.plan your legacy.org

Remember The ALS Association in your Will or Living Trust

fessional excellence and decades of dedicated

civic service. His work has contributed greatly

to Jacksonville’s economic development. His

many honors include: 2008 Ultimate CEO Award

presented by the Jacksonville Business Journal,

Distinguished Alumnus Award from P.K. Yonge

Developmental Research School in 2009 and

from the president of the University of Florida in 2008.

“Tip has been a business and civic leader for

over thirty years,” David Hodges, President/CEO

of Scott-McRae Advertising, said. “His life of

dedicated service and mentorship to individuals

and organizations has impacted our great city in a

tremendous manner. Jacksonville and its citizens

are better because of Tip Graham.”

ALS patients and families in North Florida have

greatly benefited from Tip’s generosity, and his in-

fluence in the ALS community will persist for many

years to come. Tip Graham, 61, passed away at his home in North Carolina on July 17, 2010.

DEDICATED LEADER WITH ALS | HONORED IN JACKSONVILLE

Million Dollar MadnessThe 2010 Walk to Defeat ALS has crossed the $1 million dollar mark! For the first time in our Chapter’s

history, your fundraising efforts

reached 7-digit success. Thank

you Florida walkers for your dedication to fighting this awful disease! We’ll admit it… Florida has the na-

tion’s best ALS supporters! Visit facebook.com/alsflorida to see Walk photos from every location.

12 13

PROJECT02.04.20LIVES ONMore than one year has passed since Keith

Jones lost his battle with ALS. Yet, Keith’s

wife, Alecia, is still striving to continue

the mission he launched before he passed

and achieve his ultimate dream which he

named “Project 2-4-20.”

Keith’s goal was to raise $2,042,020 for the fight

against ALS and to live strong and well through

February 4th, 2020. While ALS robbed him of his

second goal, Alecia is continuing to pursue his

fundraising mission through Project 2-4-20. It’s

her way of providing other ALS patients with hope

for the future, an improved quality of life, and an

opportunity for “one more day!”

She recently held a special ALS charity event to

continue the journey toward achieving this mission.

Over 300 people came in support of Keith’s goal.

It was a wonderful evening of dinner, dancing, a

skeet shoot off, and lots of fun at the Rod & Gun

Club. Mickey Andrews, Florida State University’s

former defensive coordinator and Keith’s defen-

sive coach at FSU, attended as the guest speaker,

and he truly inspired the crowd with his encour-

aging words about Keith’s life. Numerous former

FSU players were also in attendance.

It was certainly a night to remember, and we’re

sure Keith is smiling down from heaven! So far,

Project 2-4-20 has brought about over $135,000

to fight ALS. Alecia recently wrote: “I know Keith

would say he is so happy about our recent fund-

raising successes, but I also know he would say

we have to keep fighting! Wouldn’t it be wonder-

ful if the money we raised through Project 2-4-20

was the money that allowed researchers to find

the cure.”

Alecia is con-tinuing to pursue

his fundraising mission through

Project 2-4-20.

14 15

The whole evening was dedicated to ALS aware-

ness as the Rays took on the Red Sox.The evening

began as 10 ALS supporters met Rays players on

the field during batting practice, then Lou Gehrig’s

famous farewell speech was read from the field.

PALS Johnny Mingus threw out the game’s first

pitch along with his two kids. Baseball fans were

quizzed with Lou Gehrig trivia, and children who had

been affected by ALS sang “Take Me Out to the

Ballgame” during the 7th inning stretch. Danielle and

Melissa Franks, twin daughters of Steve Franks,

were interviewed by Rays television broadcaster

Todd Kalas, and Chapter staff member Kamden

Kuhn spent a whole inning in the radio broadcast

booth talking about ALS. Rays pitcher Jeff Niemann

also starred in a PSA to create ALS awareness.

20% Off Strike Out ALS T-shirt

PURCHASE YOURS TODAY WHILE SUPPLIES LAST AT ALSAFL.ORG

Coupon Code: 4LouGehrig - Exp: 9/10/10

$10$15

The Franks family poses with broadcaster Todd Kalas after their television interview about ALS

The conference is part of a year-round strategic

effort by The ALS Association to improve patient

care, advance research, and empower people

with ALS. By leveraging the resources of the

federal government, which is the single largest

source of ALS research funding and patient ser-

vices in the world, the Advocacy Conference is

making great strides in the fight against ALS.

Advocates flooded the Halls of Congress to

tell the ALS story and continue the roadmap to a

cure. This year’s goals:

• To increase funding for the national ALS

Registry, which may become the single largest

ALS research project ever created, with the

potential to find the cause and cure of ALS

TAMPA BAY RAYS | RAISE ALS AWARENESS2010 | ADVOCACY SUCCESS

We think the Rays rock for all they did to raise ALS

awareness, and we think you’ll agree. Go Rays!

On July 5th, hundreds of ALS supporters joined at Tropicana Field in matching “Strike Out ALS” t-shirts for Florida’s best baseball ALS awareness event yet.

•Double funding for the ALS Research Program

(ALSRP) at the Department of Defense (DOD),

a program with the sole mission of developing

a treatment for ALS.

Judging by the feedback received from meet-

ings with nearly 400 members of Congress, it is

clear that advocates made an impact as members

of Congress, both Democrats and Republicans,

signaled strong support for both of our priority

issues.

The ALS Association’s 2010 National ALS Advocacy Day and Public Policy Conference was a fantastic success. Dozens of Florida ALS advocates traveled to Washington D.C. to join with hundreds of other advocates from around the nation.

To view pictures from National ALS

Advocacy Day and Public Policy Conference,

visit www.alsa.org/policy/alsday.cfm

16 17

“Time does heal,” she said after Rick asked if the

pain ever goes away.

That was the beginning of a beautiful love story

where a villain called ALS became the common

thread that brought their two souls together.

In the weeks following that focus group, Rick and

Cindi would talk on the phone, meet for dinner,

and walk together at parks and on the beach. They

shared stories and shed tears about their spouses,

Buster and Ella.

“We would walk, bike, cry, and pray,” Rick said. “I

would talk and ask questions. She would listen and

help me get through the hard days.”

“I bought him a book about grieving and sent

him devotions – anything I could remember that

had comforted me,” Cindi said. “Neither of us were

looking for a relationship. I was very much at peace

with where I was in my life at that time.”

Yet over time, their lives continued to meld togeth-

er. The bond that ALS had created and the friendship

they shared began to bring them together as a couple

as they allowed the memories of their late spouses to

become an important part of their new life together.

“When I’m with Cindi, enjoying life, it’s like we

both bring Buster and Ella with us and smile about

the good times we are having now,” Rick said.

In late May a new chapter of their story began.

Early one morning, Rick posted signs and balloons in

The ALS Association office parking lot. The sequence

read: “I love you Cindi. Be my soul mate for life.”

She strolled in that Tuesday morning to volun-

teer. It’s a part of her weekly routine. This time, tears

welled in her eyes as she saw Rick sitting next to his

1976 red MGB. He bent down on one knee, shared his

heart, then they kissed. Our chapter staff opened the

glass office door to clap, cheer, and cry a little too. We

had been peeking to watch the scene unfold.

Rick and Cindi then walked hand in

hand to the other side of the parking

lot to let balloons up into the air.

Posters were tied to each reading: “I

love you Buster.” “I love you Ella.”

They now spend their days together crossing items

off of their bucket list. Go fishing. Exercise more. Take

the MGB for joyrides. Less work. More fun.

“I look back on the last two years, and I can say Ella

would be proud of me,” Rick said. “Look at me now. I

got the joy back!”

Cindi says she sees things more clearly now. Life

is too short, and it’s made to be lived. She’s enjoying

every moment and doesn’t want to miss a thing. Rick

and Cindi plan to sell their homes, buy a place closer

to the water, and hold a simple wedding on the beach.

“I’ve told Rick, Buster would have really liked you

and he tells me that Ella would approve of me. Life is

good,” Cindi said.

Then Rick echoes, “Life is good again.”

Findinglove after

ALS

Rick Ferguson walked into a small

room at the University of South

Florida’s medical center and slipped

into the last open seat in the room,

which was filled with people whose

lives had been affected by ALS.

During the last six months he had

found himself filled with tears and

prone to depression over the death

of his wife to ALS; yet, he agreed to

participate in a focus group to test

out a new ALS awareness campaign.

“Have you lost a loved one to ALS?” he asked

the blonde woman on his left while showing a

photo of his late wife, Ella.

Cindi Whitmer’s husband, Buster, had died of

ALS just 3 years earlier.

Rick Ferguson waiting for Cindi’s arrival at the ALS Association office parking lot.

18 19

Florida’s Mobility Equipment DealersPremiere

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888-RIDE-AWAY / www.Ride-AwayTampa.com

The all new Honda Odyssey with the Northstar ramp system and lowered floor by VMI is the ultimate in mobility, style and comfort. Allows easy entry seated in your wheelchair or on your scooter.

Honda Odyssey For larger individuals or larger wheel-

chairs the full-sized van offers the best mobility solution.Easily transports family members and additional medical equipment with ease.

Full-sized

The Bruno Joey allows stowage of your unoccupied wheelchair or scooter into most domestic and foreign mini vans. The new Bruno Turning Automotive Seat (TAS) technology offers the ability to get in and out of many popular minivans, trucks and some cars with minimal or no assistance. Many passenger and some driver applications are available.

TAS

The Bruno Meridian mounts on your trailer hitch and can carry scooters and many powered wheelchairs. The Meridian is light weight and folds up out of the way when not in use.

Meridian

Joey

To the ALS community;

We understand mobility and the importance it has for you and your family.

That’s why as a committed partner with the ALS Association Florida Chapter,

we’re here to help. Auto Mobility Sales, HDS Vans & Mobility and Ride-

away Handicap Equipment have years of experience and are the most trusted

names for vehicular mobility throughout Florida.

Our mobility consultants are well trained to field your questions and to walk

you though every step of the process of acquiring your own mobility vehicle, lift

or turning seat. We’ll make it easy and we’ll make it as stress-free as we possibly

can. Our expert mobility consultants can educate you on your needs today as well

as what your future needs might be. We can even help you with driving aids.

Check out what our consumers say about us!

“This van gave us back our normal life as we were once again able to go wherever we

pleased. The Auto Mobility Sales team was incredible in helping us choose the perfect

van for our needs and we are forever grateful to them.” — Mark and Helene McLean

HDS VANS & Mobility provides great service and offers creative problem solving

too! I love my new van! – Anonymous

“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

Upcoming Events

November 1On Eagles’ Wings Golf Classic Avila Golf and Country Club Tampa, FL

December 11Ride to Defeat ALS Largo, FL

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 The Villages 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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