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

Once Our Dream, Now a Reality: New ALS Clinic at USF

National ALS Registry is Here!

Head Trauma and ALS: Get All the Facts

November 2010

2

StaffNancy Baily President and CEO nbaily@alsafl.org - ext. 105

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

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

Whitney Brew Walk Coordinator wbrew@alsafl.org – ext. 102

Christine Bright, MSW Patient Services Director cbright@alsafl.org - ext. 130

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

Jeanette Chelius Event Director jchelius@alsafl.org – ext. 101

Aimee Freedman, BSW 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

Linda Snyder Office Manager lsnyder@alsafl.org - ext 113

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

Patricia Stanco, MHSCare Coordinator, Southwest Florida pstanco@alsafl.org - ext. 110

Courtney Verdugo, MSW Care Coordinator, Central Florida cverdugo@alsafl.org - ext 109

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

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

Robbie Gerson

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.

All Pro Automotive • Andrews McMeel Universal Foundation •

Annual Auction through Phillies Charities • Katherine Aron •

AT&T Employee Giving Campaign • Bank of America • Gayle

M. Barrington • Barbara C. Bazarian • R. Violet Bennett •

Stuart S. Billington • Mike Bixler • BlueCross BlueShield

of Florida • Stephen Blume • William & Sheila Braddock •

Butensky & Cohen Financial Security, Inc. • Larry Byrd • Dave

& Stacie Campbell (in memory of Carol Hicks) • Brad Cohen •

Community Foundation of Greater Sun City Center • Carleton

“Tim” Cummings (in memory of Barbara “Bobbie” Cummings)

John D’Amico (in memory of Rosa Quispe) • Tim Darby (in

memory of Eric Vartdal) • Dean Mead • Christine Delaney (in

memory of Leela Manchepalli) • Glenn Anderson Memorial Golf

Tournament • Arian Dubois • Vickie S. Dunleavy • A. Dutton •

Sherry Murray(in memory of Hamlin “Larry” Ballowe) • Steve

Franks • Meritt Gardner • Cecilia Hansborough • Thomas &

Sally Henderson (in memory of James Shaw) • Harvey Herer (in

memory of Carolyn Herer) • Cynthia Holloway • Nancy Huff (in

memory of Richard Huff) • IAAI, Inc. Florida Chapter(in memory

of William Allen) • Island Aviation Inc. • Intercontinental Warranty

Services (IWS) • John A. Johnson • Johnson & Johnson Family

of Companies • Jones Lang LaSalle • Bruce Scott Kaplan • Kate

Obstgarten Private Foundation • Stewart Katz • Larry & Sarah

Kerr • Juliet S. Kime • Martin E. Koscso • Bradley & Mary Lesher • Dr. William Luke (in memory of Mark McLean) • Sean & Mary

Maguire • Jane N. Martin • Dr. John & Ellen McNamara • Robert

Miller (in memory of Maureen Slattery Miller) • G. & Stephanie

Mitchell • Christina O. Moliteus • Joan Blair Moore (in memory

of Ronald Moore) • Rachel Hudak • Mark A. Nouss • Steven &

Carol O’Day • Mark O’Day • Daniel & Mara O’Day • Optimum

Leadership Strategies, LLC • Tim & Wendy Owen • Palace

Saloon • W.B. Parker • Harold & Mary Perper • Cindi Petito •

Sanofi-aventisa • Robert & Eyda Schade (in memory of Gladys

Gonzalez) • Robert & Denise Scheffer • Sherman Scott • John

D. Sharp • Katherine Southard • Southern States Ins. Agency,

Inc. • Lola Spurgeon (in memory of Ronnie Spurgeon) • Dave

Stetler • William & Morgan Storm • Edward & Ann Sussenguth • Ted Williams Museum • The Bailey Group • Triple S Mobility,

Inc. • Marie Eaton Turianski (in memory of Gerald Turianski) • UBS Matching Gift Program • Ultra Sports LLC • Vanguard

Charitable Endowment Program • Carolyn F. White •

Richard Zabak

3

In July, Stephen Blume presented a $100,000

donation to our chapter. We in turn presented

the gift to Clifton Gooch, MD, professor and

chairperson of the USF Department of Neurology

and an ALS specialist.

The USF ALS clinic includes both an academic

and research component, and clinic staff has

plans for it to become an ALS Association

Certified Center of Excellence. These Centers of

Excellence set the national standard for ALS-

specialized care.

The USF ALS clinic provides state-of-the-art

care through a team of people specially trained

to meet the needs of those living with ALS. This

unique care model brings together professionals

from multiple healthcare disciplines and allows

an ALS patient to receive care from each during

a single visit. The team consists of a neurologist,

physical therapist, occupational therapist,

respiratory therapist, nurse, registered dietician,

psychologist or psychiatrist, speech and

language pathologist, and social worker.

“We’re very thankful that Mr. Blume provided

this seed money and know that local ALS

ONCE A DREAM, NOW A REALITY | NEW ALS CLINIC AT USF

patients will benefit greatly from his generosity,”

said Dr. Gooch, who will direct the clinic.

A portion of the funds Blume donated were put

to immediate use in hiring a nurse coordinator

for the clinic, Sharon Usher, BSN, RN, CCRC.

She is a critical point person for ALS patients

in coordinating all of their care across multiple

specialties.

“It’s so nice to see how this gift has had such

an immediate impact,” said Blume, whose father

died from ALS. “This clinic is transformational

and will provide a much needed resource for

Tampa-area patients and their families.”

Not only will the clinic provide invaluable

care and support to countless ALS patients and

family members in the coming years, it will

also lay the foundation for a new translational

research program, focused on finding effective

treatments for ALS.

The new ALS clinic is now open at the Morsani

Center for Advanced Healthcare on the USF

campus. For information about scheduling an

appointment, contact your care coordinator.

A state-of-the-art clinic focusing solely on people living with ALS is now open at the

University of South Florida in Tampa. The Florida Chapter has dreamed of this clinic

for more than four years but has always lacked the funding to make it a reality. That’s

changed now thanks to a generous gift from a local businessman.

4

THE NATIONAL ALS REGISTRY IS HERE!WHAT CAUSES ALS? WHAT ARE THE RISKS? HOW MANY AMERICANS ACTUALLY HAVE THE DISEASE? All of us who have been touched by ALS have asked those questions at some point. And we’ve also heard the answer—that there are no clear answers. But that may soon change. Because of the advocacy of the ALS community, the federal government has now fully implemented the National ALS Registry.

In 2008, The ALS Association celebrated an advocacy success when Congress charged the federal Agency for Toxic Substances and Disease Registry (ATSDR) with developing a registry to gather and organize information about people living with ALS. The National ALS Registry represents a groundbreaking step in the fight against ALS. This registry will give researchers data about who has the disease and where it occurs. They can use registry data to detect disease pattern changes over time and to investigate possible common risk factors among ALS patients.

THIS INFORMATION CAN HELP RESEARCHERS

•estimatethenumberofnewcasesofALSidentified each year•estimatethenumberofpeoplewhohaveALSata specificpointintime•understandwhogetsALSandwhatfactorsaffect the disease•examinetheconnectionbetweenALSandother motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS •improvecareforpeoplelivingwithALS Currently, there is no accurate picture of who has ALS. But the more people living with ALS who participate in this registry, the more accurate the picture will become. That means we need your help. People living with ALS are now able to self-enroll in the registry. By doing so, they provide scientists and doctors with the information needed to answer these and countless other questions that have gone unanswered since ALS was first discovered more than 130

years ago. Indeed, for the first time, every person with ALS will be counted. It’s important that every person with ALS go to the ALS Registry website at www.cdc.gov/als and sign-up! We need everyone in the ALS community to spread the word about the registry to people across the country and encourage them to enroll. The ALS Association has provided tools to help you on our national website (www.alsa.org), including instructions on how to enroll, fact sheets, and answers to frequently asked questions.

We hope you will continue to be a part of the advocacy programs that have made the registry possible. After all, we need to continue to reach out to Congress and secure the funding that is necessary to move this vital project forward. Please make sure you have signed up as an ALS advocate through our website, www.alsa.org/policy/involved.cfm.

It was advocates like you who led the fight to enact the ALS Registry Act and secure Congressional funding to build the registry. And together, we can continue to create the roadmap that will lead to a treatment and cure for Lou Gehrig’s Disease.

The ATSDR, which is implementing the

National ALS Registry, is a federal agency of

the U.S. Department of Health and Human

Services and sister agency to the Centers for

Disease Control and Prevention (CDC).

5

And there I was, standing

just yards away from home plate.

Tropicana Field was filling up fast,

and few seats went unclaimed. The

Red Sox were to my left, stretching

and warming up. The Rays were out

on the field throwing the baseballs

to each other in a repeating pattern.

I recognized players on both of the

teams, and I thought about who I

was going to try to get an autograph

from. “When do we go out?” my

brother, Samuel, whined. “I have no

idea,” my sister, Jennifer, replied.

I didn’t know myself, and I really

didn’t care what time it was. The

later it was, the closer I was getting

to my extreme mortification.

I quite frankly wasn’t ready to

die. I nervously picked at the grass

on the field for a second, and then

looked up at the stadium. There was

a sea of yellow shirts, as The ALS

Association liked to call it, to the

right of my perspective. While I was

staring up into the rows, laughing

to myself about how banal I was

feeling, my sister, Jennifer, let out

a high-pitched squeal next to me. I

don’t often hear strange noises like

that, so I turned to look at her. She

was a hilarious sight, my 39-year-

old sister acting younger than my

9-year-old brother. Big-eyed, she

gasped for a moment, and then

whispered excitedly, “Here comes

Evan Longoria….HERE COMES

EVAN LONGORIA!” I followed her

gaze, and sure enough, there was

that famous giant trotting towards

us. He veered off to the right and

went over to speak with another

family who had won their right to

be on the field. “You boys are going

to get his autograph,” Jen told

Samuel. “And neither of you will

ever forget this day.”

Seeing that no one famous was

making us beg for their autograph,

Joe Maddon, the Rays’ manager,

came over to meet us. “Hey guys,”

he began. “Having fun?” Samuel

whispered into my ear, “Who’s he?”

I had no idea, and I just assumed

he was another fan—a random

older stranger who wanted to break

the ice. Of course, my sister knew

who he was, and she started rifling

excitedly through her purse. She

pulled out two baseballs and a

marker, and then shoved one into

Cure Ball Remembering ALS Awareness Nightwritten by Isaac Mingus, age 13

6

CURE BALL | REMEMBERING ALS AWARENESS NIGHT

my brother and my hands. After that awkward scramble,

Jen smiled a large, toothy smile at Maddon and held

out her hand for him to shake. “It’s awesome to get

to meet you, Mr. Maddon! Could you please give my

brothers your autograph?” she implored. “Of course,”

he responded calmly, and then took the baseball and

marker from Samuel’s hand. After he had signed and

returned my ball, Jennifer asked if he would take a

picture. So he stood behind my brother and me and

posed without complaint. After my sister had taken a

couple dozen pictures, he patted me on the back and

walked off. By that time, Evan Longoria had finished

talking to all the families in front of us and had come

over to our little corner by the rows. High-fiving my

brother, he queried, “How are we doing tonight?” I

thought Jen was going to pass out, so I shook his hand

and told him that we were doing fine. “That’s great!”

he said. Jen regained control, again gave her formal

greetings, and asked if he could sign the two baseballs

she had brought for the occasion. He did, much faster

than his older manager, and gave us a warm smile.

“Anything else I can do for you?” Longoria asked us.

“Yes,” Jen began. But instead of asking for a picture,

she said, “Would you sign our shirts? Please?” Out of

all the embarrassing moments I’ve had and am destined

to have, I’m sure that will always be one of my more

embarrassing times. “Sure I can, ma’am,” Longoria said,

and so he signed three shirts and two baseballs for us. And

of course, we ended up taking multiple pictures as well.

By the time all the players of both teams had gone to

their own dugouts, the stadium was looking almost full. I

remember looking out at the many faces, wondering how

many hundreds of people I’d be throwing my first pitch

out for. I estimated at the time that there must be at least

two thousand people in the rows. I’d be told by Mom

later that there were actually well over thirty thousand

people in the Trop that night. As I stood there watching

everyone, I began to hear creaking noises coming from

behind me, and I turned around to see my dad’s massive

wheelchair coming through the gates to get onto the

field. “Good luck, little Mingus,” Jen whispered in my

ear, and then walked off the field through the same gate.

Dad’s coming onto the field was a frightening moment

for me, for when he came out to the field, it meant that

I was supposed to go to the mound with Samuel and

him very soon. “How’re you doing?” he inquired of me.

I never got to answer, because the representative from

The ALS Association came and tugged on my shirt. “It’s

almost time,” she stated. With that, my dad, my brother,

and I followed a Rays’ representative out to a designated

point on the diamond. There was a ramp there for Dad,

so that his wheelchair didn’t mess with the carefully

drawn lines, and a fancy camera was pointed right at us.

I looked at the jumbotron, and saw that we weren’t on

the screen yet. The employee handed Pop a baseball,

and instructed him to give it to me when we were by

the mound. After I got the ball, I was going to step onto

the mound, throw my pitch, and step off the mound.

Much easier said than done, I thought to myself. After

Dad told her that he understood, the young employee

gave Samuel a high-five, shook my hand, and promptly

walked back to her station by the Rays’ dugout. Dad

smiled up at me, and then the light on the camera

came on. A man’s voice began telling the audience

who exactly was tonight’s pitcher, and then went on to

explain Dad’s disease. I didn’t hear a word of it, because

I was too focused on the task at hand. We then began

to make our way to the mound. It seemed to take the

Dad had a happy glint in his eye as he shook Price’s hand, and then asked him, “Would you sign my son’s baseball?”

7

wheelchair ages to get there, and once we finally made

it, Dad handed me the ball. “Show ‘em what you’ve got,”

he encouraged. I tried to smile, and then hopped up

onto the mound. I stared at the catcher for a moment,

barely thinking, attempting to meditate and get my mind

straight. The last sane thought I managed before that

baseball flew was a simple one: the catcher was David

Price. I pondered later why a pitcher of his caliber would

be catching my ball. I wound up, and then threw the

baseball as perfectly as I could.

I never saw the ball go; I averted my eyes the second

it left my hand. I looked up, and with relief, I saw my ball

had at least made it across the plate and was resting

in Price’s glove. I turned to my brother, who was still

looking distant and lost, and then to my father, who

was tearing up. Dad held out his hand, and I shook it.

My mom told me most everyone in the stadium was

clapping or cheering, but I never heard them. I let go

of Dad’s hand, and then felt a sudden weight on my

shoulder. I turned around, and there was a tan Herculean

standing behind me, shiny white smile and everything.

Price handed me my ball and shook my hand. “Not a

bad pitch!” he exclaimed to us. I wasn’t sure whether I

should agree with him or not, but I smiled back and took

the compliment. Dad had a happy glint in his eye as he

shook Price’s hand, and then asked him, “Would you

sign my son’s baseball?” And so we received another

rare signature, and then took yet another memorable

photo with a celebrity. After The ALS Association

representative took a few hundred photos, Price went

back to the dugouts, and Dad began driving back

toward the field’s gate. When we had safely made it

over a few ramps and through the thin wire cage, I

began getting compliments and slaps on the back from

perfect strangers. It was what could be described as

my fifteen seconds of fame, and it wasn’t all too bad.

At least I had made it successfully. And though, after a

long game, the Rays still beat Boston, I cherish that day

as one of the best I’ll ever have.

I’m still amazed at what that pitch did to me. As I wrote

this, I relived those hours as clearly as if they happened

just a few minutes ago. My heart still pounds thinking of

all that I got to do and see, and of the famous people

I had the pleasure of meeting. I still laugh when I think

of the crazy embarrassing moments, and remembering

Dad’s expression as I stepped off the mound still tears

me up once in awhile.

That simple throw meant to me that we were a step closer to curing Lou Gehrig’s disease. It made me realize there were people who cared enough to fight for answers and for a cure. And though the “sea of yellow”

in the rows may not have seemed like a large amount

of people at the time, reflecting on the night only made

me think of all the strangers not wearing yellow ALS

shirts, who gave my family encouraging words as we

walked off the field, who really wanted to prove to us

that they cared that innocent people were being taken

by the cruel disease. And what seemed most important

about that night to me was not that we got to see a

good game. It was not the fact that I managed to meet

some big names. It hit me riding back to Venice in my

car that thousands had come together that night and,

knowingly or not, had brought us a few paces closer

to defeating ALS, and to helping the many victims live

longer with their loved ones. I don’t think I’ll ever forget

that cure ball.

8

If you didn’t read the August 17 story published in the New York

Times about head trauma and ALS, you probably heard about it.

The article questioned whether or not baseball legend Lou Gehrig

actually had ALS. But to get a full grasp on the reported study,

there’s more you should know.

The New York Times article was based on a study published in

the Journal of Neuropathology and Experimental Neurology.

The study states that epidemiological evidence suggests that the

incidence of an ALS-like motor neuron disease may be increased

in association with repeated head injury. Of 12 cases studied

(athletes who had been exposed to head trauma and strenuous

exercise), 10 cases had widespread TAR DNA-binding protein (TDP-

43), and three of the 10 athletes also developed “a progressive

motor neuron disease” that mimics ALS.

Boston University researchers found these toxic proteins in

the spinal cords of the three athletes. These same proteins

have been found in the brains of athletes with chronic traumatic

encephalopathy (CTE), a disease linked to head injuries that

causes cognitive decline, abnormal behavior, and dementia.

Ann McKee, M.D., a neurology professor at Boston University

who has studied CTE in athletes, noticed that an unusually

high number of football players seemed to be affected by ALS.

HEAD TRAUMA AND ALS | EXPLORING ALL THE FACTS

HEAD TRAUMA AND ALS

9

“These results are very

exciting,” said ALS

Association Chief Scientist

Lucie Bruijn, Ph.D. “However,

because of the small number

of cases involved in the

study, conclusive results

are highly speculative

until additional studies are

conducted.”

ALS is a complex disease

with multiple causes and can

manifest itself in a variety

of ways. Head trauma is one

of several environmental

factors that have been

suspected to influence

the development of ALS;

however, this has not yet

been proven.

CTE is usually characterized

by cognitive and behavioral

symptoms after head injuries

and can be observed, during

an autopsy, in the brain.

However, ALS symptoms

typically include muscle

weakness and paralysis with

abnormalities primarily seen

in the spinal cord.

Of the three athletes

involved in the study who

developed ALS several

years before death, two

were professional football

players and one was a boxer.

The report suggests that

the play of contact sports,

including boxing, football, and

hockey, might be associated

with a widespread TDP-43

proteinopathy that, in some

individuals, is manifested as

ALS.

However, the New York Times

article suggested that Lou

Gehrig may have had CTE

rather than ALS. Again, this

is highly speculative even if

Gehrig received head injuries

during his career, particularly

because Gehrig never

displayed any of the cognitive

dysfunction associated with

CTE. In fact, it is important

to note that the study makes

no mention of Lou Gehrig or

baseball.

This new study demonstrates

much of what we already

know about ALS. That is why

additional funding is needed

for research, not only to

answer questions related to

this study, but also to find

ways to better diagnose

the disease and to find

treatments.

10

1 Offer a few hours of respite time to a family caregiver, so he or she can spend time with friends or simply relax.

2 Help a family caregiver decorate his or her home for the holidays or offer to address envelopes for holiday cards.

3 Offer to prepare Thanksgiving dinner for a caregiving family, so they can take a break and enjoy the holiday.

4 Send them a card of appreciation or a bouquet of flowers.

November is National Family Caregivers Month! Our Favorite Ways to Celebrate.

William Aldridge, Jacksonville

William Allen, Port Charlotte

Saeed Ally, Miramar

Nancy Anderson, Holmes Beach

Donna Arndt, Ft. Myers Beach

Willie Asbell, Archer

Harold Beaudry, Inverness

Robert Benjamin, Jacksonville

Stephen Bove, Altamonte Springs

Jon Chambers, Palm Coast

Alfred Crane, Fernandina Beach

Eduardo Crespo, Davie

John Crissman, Port Charlotte

Aspasia Dake, Orlando

Ramona Delgado, Jacksonville

Ethel Dennis, Jacksonville

Alicia Driscoll, Fort Pierce

Herbert Dunlap, Gainseville

Matthew Egan, Tampa

Francine Fligman, Margate

Catherine Fulton, Oviedo

Gladys Gonzalez, Fort Lauderdale

Henry “Tip” Graham, Jacksonville

Carol Hicks, The Villages

Wilbur House, Ft. Myers

Nadine Jablow, Inverness

James Kelly, Naples

Mia Lytle, Jacksonville

Darryl McAhren, Sun City Center

Mark McLean, Wellington

James Moohan, Valrico

Dalia Morales, North Fort Myers

Gustavo Munoz, Fort Lauderdale

Stephen Netzer, Jupiter

B.J. Nuckolls, Fort Myers

James O’Rourke, Englewood

Walter Siress, Panama City Beach

Robert Smith, Fort McCoy

Rose Mary Smith, Destin

George Sofronas, Vero Beach

Jerome Stelling, Madeira Beach

Peter Sterlacci, Ocala

Elisabeth Stolz, Naples

Jessie Swift, Silver Springs

Yvonne Swords, Boca Raton

Ruth Wagner, Tampa

John Ward, Lake City

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.

11

BLAZ

ING

THE

TRAI

L THE RIDE TO DEFEAT

ALS IS JUST AROUND

THE CORNER ON

DECEMBER 11.

ARE YOU JOINING US

FOR THE RIDE OF

SOMEONE ELSE’S LIFE?

IF SO, YOU SHOULD

FOLLOW THE LEAD OF

THESE RIDE TO DEFEAT

ALS TRAILBLAZERS

WHO ARE PAVING THE

WAY TO FUNDRAISING

SUCCESS AND MAKING

A BIG DIFFERENCE IN

OUR QUEST TO END

ALS.

Ride to Defeat ALS 12.11.10Register now at www.FloridaRidetoDefeatALS.org

Walsingham Park, Tampa Bay Area

continued on page 12-13

12

MEET MACY’S STAR RIDERS

Macy’s Star Riders didn’t hesitate to hit the

pavement early! The team, which consists

of Macy’s employees, as well as their

friends and family, has already recruited

lots of members and are well on their way

to achieving a $5,000 fundraising goal!

What’s their secret? Online fundraising, of

course! They’ve raised money by sending

emails and asking friends to visit their

team’s fundraising page. Daniel Delgado

is the team’s fearless leader who jump-

started their success by setting a great

example. He sent over 400 emails!

We shouldn’t forget to mention the special

ingredient—a matching gifts program.

Macy’s takes a $25 donation and turns

it into $50… fast! Your company might

just have a matching gifts program, too.

Visit matchinggifts.com/ALS to find out.

Pair online fundraising with that special

ingredient… and like Macy’s Star Riders,

you’re sure to find success.

On ride day, look for their team wearing

matching jerseys sponsored by Macy’s.

How’s that for team spirit?

ANGIE CRAWFORDMACY’S STAR RIDERS NAT BORSH

BLAZING THE TRAIL | RIDERS

13

GET INSPIRATION FROM ANGIE

Angie Crawford, of Jacksonville, is an athlete

who spends her spare time fundraising for

causes close to her heart. She was first inspired

by Jon Blais, a young, determined triathlete

who, although experiencing significant

ALS symptoms, went on to compete in and

complete the IronMan World Championship

in Kona, Hawaii. Angie is also now inspired

by Mike and John, two military veterans with

ALS. She is putting an extraordinary effort

into the fight against ALS… and working

double-duty at it!

Not only is Angie ready to be a part of the

Ride to Defeat ALS, but she competed in

Ironman Louisville on August 29th and raised

money through the Janus Charity Challenge.

She designated The ALS Association Florida

Chapter as her charity of choice, and she

collected over $5,000! Then, Janus, a global

asset management firm, added $750 to her

total since she was a top fundraiser among

the athletes.

No doubt, her fundraising success could be

attributed to the power of an “email ask.” In

a recent email she wrote to her friends: “Your

job is easy, just click on the link below, and

donate, big or small. Then, you will avoid

getting more begging emails from me!”

Angie has passion and determination in the

fight against ALS. That’s what makes her a

trailblazer!

“GO BIG” LIKE NAT

Nat Borsh lives by the motto, “Go big or go

home!” He’s an athlete who loves to use his

skills for a great cause. When a family friend

was diagnosed with ALS, he geared his passion

for cycling and his determination to make a

difference toward the Ride to Defeat ALS.

What makes Nat a trailblazer? He has leveraged

social media to make an impact. Armed with

a Facebook page called ‘Nat Rides to Defeat

ALS’ and some witty status updates, he

quickly recruited hundreds of fans and raised

hundreds of dollars! He has posted workout

routines to prepare for the ride and shared

funny thoughts and stories. He even held a

$100 goatee challenge—daring his friends to

donate $100 to make him grow a goatee.

Not only has Nat raised funds and awareness,

he has also made friends along the way and

has been deeply touched by some of the

wonderful messages he has received from

people affected by ALS.

Nat owes his fundraising success to a little

creativity and a lot of determination. “Think

outside of the box,” he says. “Instead of having

a car wash, throw a dog wash. People are

attracted to the fun and silly. It makes them

smile and puts them at ease. And it shows

that you are genuine. That’s when people are

willing to help.”

Nat’s not afraid to ask his friends and family

to support a great cause. He says you might

come up empty-handed sometimes, but the

more you try, the more people you will find

who are willing to make a difference. Now it’s

your turn! Get creative and get fundraising

for the Ride to Defeat ALS Nat-style.

14

2011 WALK TO DEFEAT ALS™ | SAVE THE DATE

15Register now at www.WalktoDefeatALS.org

Orlando APRIL 8, 2011

Lake Eola

Friday Check-in 5:30PM

Walk 7PM

Sarasota/Manatee APRIL 16, 2011

Payne Park

Saturday Check-in 8:30AM

Walk 10AM

Palm Beaches MARCH 26, 2011

Carlin Park

Saturday Check-in 8:30AM

Walk 10AM

JacksonvilleAPRIL 2, 2011

Seven Bridges Grille & Tinseltown Theaters

Saturday Check-in 8:30AM

Walk 10AM

South Florida MARCH 5, 2011

TY Park

Saturday Check-in 8:30AM

Walk 10AM

Tampa Bay MARCH 12, 2011

University of South Florida

Saturday Check-in 8:30AM

Walk 10AM

16

ALS Amelia Island Golf Classic

On July 30, Mark O’Day, who lost his father to ALS, held his 6th annual ALS Amelia

Island Golf Classic and raised nearly $12,000 for The ALS Association. Thank you

for your dedication to the fight against ALS!

The International ALS/MND Symposium is an important annual meeting of the best and brightest minds in ALS research and clinical care. In 2007, it was held in Toronto, Canada; in 2008, in Birmingham, UK. Last year, it was Berlin. But this December, this consortium of scientists and ALS health professionals will meet in our own back yard—Orlando, Florida.

This year’s International Symposium is hosted by The ALS Association at Orlando’s J.W. Marriott. It offers the opportunity for scientists around the globe to meet andexchangeideastoexpandthesearchfor clues into the cause and cure of this devastating disease. The itinerary includes a number of research meetings for the ALS community.

December9-AsktheExpertsForum,whichisgearedspecificallyforpeoplewithALSand families (no registration is required.)

December 10 - Allied Professionals Forum, whichisfocusedonpracticeandexperiencefor health professionals in the care and support of people living with ALS/MND.

December 11-13 - International Symposium, which is geared toward researchers, clinicians, and allied professionals. It is planned as two parallel meetings, one on biomedical research and the other on advances in the care and clinical management of people affected by ALS.

ThefindingsattheSymposiumandsynergythat is created by everyone working closely together are bringing us closer to achieving our goal of discovering new treatments and a cure.

International ALS Symposium Comes to Orlando

Nancy Baily, Ardith O’Day, Rick Mullaney, Mark O’Day, Mara O’Day

1st place net team, Jon Walker, Joe Parrish, Ed Febles, and Mark Cochran, along with tournament organizer

Mark O’Day (center)

For more information, visit www.alsmndalliance.org.

17

8110 Ulmerton Road • Largo, FL. 33771�Ph: (727)-535-6100 • Fax: (727)-535-6466�

Toll Free: 800-828-4188 • Sales@amimobility.com�

� Powerchairs�� Scooters�� Lifts�� Ramps�

� Complex Rehab�� Lift Chairs�� Rentals�� Repairs�

Ulmerton Rd�

Belcher Rd�

Keene Rd�

N�

Free�

Estimat

es�

800-828-4188�

As more and more medical equipment is being developed and marketed, people living with ALS may find themselves with many difficult decisions to make about technology. Professional advice from an Assistive Technology Provider (ATP) can help save you time and money, while ensuring you’re making the best decisions possible. ATPs have many specialties, including augmentative communication, seating and mobility, and universal design and accessibility.

Ruben Jones is an ATP with Active Mobility Innovations in Largo, Florida. He says ATPs like himself can help you assess the need and appropriateness of a broad range of devices, services, and strategies.

“We are uniquely trained and certified to assist you in finding just the right tool to make your life a little bit easier,” Jones said.

An ATP can help you determine which technologies and strategies you can use to improve your functioning in a variety of activities, from something as simple as opening a jar, to something as complex as remaining mobile.

According to Jones, an ATP can help you answer a number of difficult questions: •WhatarethetasksthatIneedhelpwith? •Whattypesofassistivetechnologyareavailabletomeetmyneeds? •Whattypeofassistivetechnologywillgivemethegreatestindependence? •Whichdevicesaremostlikelytomeetmychangingneeds? •Howup-to-dateisthispieceofassistiveequipment? •WhatarethefundingsourcesfortheassistivetechnologyIneed?

For more information about ATPs, or for help locating one, contact your care coordinator.

HAVE A MEDICAL EQUIPMENT QUESTION? | CONSULT AN ATP

18

Florida’s Mobility Equipment DealersPremiere

RIDE-AWAY HANDICAP EQUIPMENTTAMPA BAY,

THE TREASURE COAST, THE GULF COAST

& CENTRAL FLORIDA

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

19

Florida’s Mobility Equipment DealersPremiere

RIDE-AWAY HANDICAP EQUIPMENTTAMPA BAY,

THE TREASURE COAST, THE GULF COAST

& CENTRAL FLORIDA

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 27 Tampa Bay Lightning ALS Awareness Game St. Pete Times Forum Tampa, FL

December 11Ride to Defeat ALS Washington Park 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

Follow us on the web:

News magazine layout and design by Dunn&Co.