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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

The 2011 Walk to

Defeat ALS®

STRAIGHT TALK WITH THE KIDS

ALGAE AND ALS? WHY USF RESEARCHERS

ARE INVESTIGATING

FEBRUARY 201 1

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StaffJudie Benwick, MSH, MPH, CHES Care Coordinator, North Floridajbenwick@alsafl .org - ext. 112

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

Aimee Freedman, BSWCare Coordinator, Northeast FLafreedman@alsafl .org - ext. 117

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

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

Courtney Verdugo, MSWCare Coordinator, Central Floridacverdugo@alsafl .org - ext 109

Christine Bright, MSWPatient Services Directorcbright@alsafl .org - ext. 130

Whitney BrewWalk Coordinator, Tampa & Sarasotawbrew@alsafl .org – ext. 102

Katie ShankWalk Coordinator, Orlando & Jacksonvillekshank@alsafl .org - ext. 115

Linda SnyderEvent Associate lsnyder@alsafl .org - ext 113

Donna Valin GhiotoRegional Director of Developmentdvghioto@alsafl .org - ext. 121

Cristina VidalEvents Coordinatorcvidal@alsafl .org - ext. 131

Jeanette CheliusEvent Directorjchelius@alsafl .org – ext. 101

Lisa BublinecOffi ce Administratorlbublinec@alsafl .org - ext. 108

Robin SeeBookkeeperrsee@alsafl .org - ext. 104

Kim HannaExecutive Directorkhanna@alsafl .org - 105

Board ofTrusteesMartin Koscso

Chairman

James Moroney

Past Chairman

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 AssociationFlorida 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 fi nancial 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.

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ALGAE AND ALS?USF RESEARCHERS REPORT FINDINGS

In a recent study, University of South Florida neuroscientists reported that nutritional supplementation with spirulina, a nutrient-rich, blue-green algae, appeared to provide neuroprotective support for dying motor neurons in a mouse model of ALS. Although more research is needed to prove

spirulina-supplemented diet could provide clinical benefi ts for ALS patients.

The spirulina dietary supplement was shown to delay the onset of motor symptoms and disease progression, reducing infl ammatory markers and motor neuron death in the ALS mouse model. Spirulina, an ancient food source used

anti-infl ammatory effect on motor neurons, the researchers said.

for oxidative stress has been associated with ALS, and, in our past studies, we demonstrated potent decreases in markers of oxidative damage and infl ammation in aged rats fed diets supplemented

Davis, PhD, DSc, assistant professor in the Department of Neurosurgery and Brain Repair at USF. “In this initial study, the diet supplement was fed only to pre-symptomatic mice. Further studies

of symptomatic ALS mice are needed to prove the

Specifi cally, when the USF researchers tested compounds found in blueberries and spirulina for effectiveness in animal models of stroke and aging in past experiments, they noted neuroprotective effects of the nutritional supplements.

The current study compared ALS mice receiving a spirulina-supplemented diet over a 10-week period with mice that did not receive the diet supplementation. The spirulina-fed ALS mice showed reduced infl ammatory markers and motor neuron degeneration over that period.

“The focus of our future ALS experiments will include motor neuron counts and an examination of lifespan following dietary spirulina supplementation in symptomatic ALS mice,” said study co-author Paula C. Bickford, PhD, a professor in the USF Department of Neurosurgery and Brain Repair and

LEAD AUTHOR SVITLANA GABUZOVA-DAVIS, PHD, DSC

SPIRULINA TABLETS

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2010 RIDE TO DEFEAT ALS: A Cycling Success!

On December 11, hundreds of cyclists gathered in Largo, Florida

for the Ride to Defeat ALS. Riders took off on one of three routes

(5-mile, 25-mile, or 62.5-mile), and the results of their efforts made

a big difference in the fi ght against ALS. All in all, the Ride has raised

event. Thank you riders, volunteers, sponsors, and donors for making

this event a fantastic success. All funds raised through the Ride

support our vital patient services programs and research to fi nd a cure.

www.FloridaRidetoDefeatALS.org for registration details.

TOP 10RIDE TEAMSJean’s Dream TeamGrandpa’s TurkeysTeam LeximusHal’s PalsTeam MarkWintersville WarriorsUSAmeriBankMitzvah in MotionDFLTeam AMI

TOP 10 INDIVIDUAL FUNDRAISERSKristy HoverkampHeidi CambataHeidi LehmanRobert ShawAlbert HowardJane KaminskiJosh LangholzRuben JonesCheryl HendersonMike Loftus

*This listing represents fundraising totals as of 1/13/11

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9-year-old Marci Chapman wrote us this note whilecollecting donations for The ALS Association in honor

of her grandfather, Gene, who is living with ALS.

“My Papa Has ALS.”

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Gearing Up 2011 Walk toDefeat ALS®

The 2011 Walk to Defeat ALS® is just around the corner! Last year, you helped us raise more than $1 million, and this year, we know you can help us exceed it. Each year, The Florida Chapter depends on the Walk to provide the funding we need to sustain our support and services for much of the following year. When the Walk is successful, we can expand the support and services we offer to patients with ALS and increase our funding of cutting-edge research. With your help, we know that the 2011 Florida Walks can make the biggest impact yet in the fight against ALS!

SET A PERSONAL FUNDRAISING GOAL.Shoot for the stars! It’s easier than you think!

PERSONALIZE YOUR WEBPAGE.It’s easy. Just log in to your online participant center, by visiting http://walkFL.alsa.org. Sure, the template we’ve provided is great, but friends and family who visit your page want to know the story behind your cause. Your personal webpage is a perfect avenue to communicate just that.

MAKE THE FIRST DONATION TO YOURSELF.Your dedication will motivate others to take action too.

SEND EMAILS USING OUR ONLINE EMAIL TOOLS.It’s a tried and tested method that always brings success. Log in to your participant center where you can choose from a selection of sample messages or write your own to send to your family and friends. Whichever option you choose, the process is quick, easy, and sure to make your fundraising thermometer rise.

SEND FOLLOW-UP THANK YOU EMAILS.Show your generous network of supporters how much you appreciate them. Your online participant center makes it easy to send thank you notes to those who have donated on your behalf.

SEND REMINDERS TO THOSE WHO HAVEN’T RESPONDED.When your friends and family received your first email, they may have been too busy… too tired… too stressed. You can quadruple your chances for success by sending reminders. Did you know it takes 3 requests for the average person to take action? Don’t be afraid to keep asking!

ASK YOUR EMPLOYER ABOUT A MATCHING GIFTS PROGRAM.Many companies will match their employees’ charitable contributions. Be sure to ask your employer about it! And don’t forget to ask all of the people who sponsor you to find out if they have a matching gifts program at their workplace. You can also visit www.matchinggifts.com/als to see if your company participates.

ENTER YOUR DONATIONS ONLINE, THEN TURN IN THE $$$!Enter those gifts online, and watch your thermometer rise! If you’d like to save time on Walk day, you can mail your donations to our office beforehand. The ALS Association Florida Chapter | 3242 Parkside Center Cir. | Tampa, FL 33619

PUT ON YOUR FAVORITE SHOES AND GET WALKING!Once you complete every step, we promise you’ll find yourself on our list of all-star walkers. Give yourself a pat on the back and have a blast at the Walk to Defeat ALS.

I’M REGISTERED, NOW WHAT? YOUR CHECKLIST FOR SUCCESS

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EXTRA TIPS FOR TEAM CAPTAINS

1 Never stop recruiting walkers. 2 Set a good example for your teammates

by updating your personal page, sending emails, and tracking your

progress. 3 Communicate often with your team members and schedule

team meetings. 4 Design a team t-shirt for Walk day. 5 Give advice and

suggestions on ways to fundraise. 6 Be an encourager!

ONLINE PARTICIPANT CENTER 9-1-1

Need help navigating your online Walk Participant Center? Your Walk coordinator

can come to the rescue! Whether it’s personalizing your page, sending emails,

or just giving some great fundraising tips and tricks, we’re here to help. Don’t

hesitate to contact us!

Greater Tampa Bay | Sarasota/Manatee | Fort Myers Virtual WalkWhitney Brew888.257.1717. ext 102wbrew@alsafl.org

Palm Beaches | South FloridaDonna Valin Ghioto888.257.1717. ext 121dvghioto@alsafl.org

Jacksonville | OrlandoKatie Shank888.257.1717 ext 115kshank@alsafl.org

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$4,000 $6,000 $7,500 $15,000

1 Receive special recognition at the Walk and a pre-printed sign with your team’s name.

2 Receive a courtesy pick-up. We’ll visit your team captain to pick up all of your team’s donations and drop off your team’s t-shirts while we’re at it!

1 Donut Party! Pick a day, and we’ll deliver donuts to your team.

2 Receive special recognition at the Walk and a pre-printed sign with your team’s name.

3 Receive a courtesy pick-up. We’ll visit your team captain to pick up all of your team’s donations and drop off your team’s t-shirts while we’re at it!

1 Donut Party! Pick a day, and we’ll deliver donuts to your team.

2 At the Walk, we’ll reserve a special table where your team can gather for pre-walk festivities.

3 Receive special recognition at the Walk and a pre-printed sign with your team’s name.

4 Receive a courtesy pick-up. We’ll visit your team captain to pick up all of your team’s donations and drop off your team’s t-shirts while we’re at it!

1 Pizza Party! Pick a day, and we’ll deliver pizza to your team!

2 At the Walk, we’ll reserve a special table where your team can gather for pre-walk festivities.

3 Receive special recognition at the Walk and a pre-printed sign with your team’s name.

4 Receive a courtesy pick-up. We’ll visit your team captain to pick up all of your team’s donations and drop off your team’s t-shirts while we’re at it!

If you’re a member of an all-star walk team, we want to make sure you know how much we appreciate you! If you’re not, we want to give you a little incentive to be one! Check out these rewards for Walk teams that make a big impact in the fight against ALS!

Introducing New Walk Incentives that Put the Fun in Fundraising!

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1 OPENING THE ALS CLINIC AT THE UNIVERSITY OF SOUTH FLORIDA

2 RAISING $1 MILLION THROUGH THE WALK TO DEFEAT ALS FOR THE FIRST YEAR EVER

3 ADVOCATING FOR AND CELEBRATING THE LAUNCH OF THE NATIONAL ALS REGISTRY THROUGH THE CDC

4 TAKING THE PIECE BY PIECE AWARENESS DISPLAY TO WASHINGTON D.C. AND EDUCATING THOUSANDS MORE PEOPLE ABOUT THE DEVASTATION CAUSED BY ALS

5 JOINING WITH THE TAMPA BAY RAYS TO RAISE AWARENESS OF ALS DURING THEIR JULY 5TH GAME WITH THE BOSTON RED SOX

6 HOSTING THE INTERNATIONAL ALS SYMPOSIUM IN ORLANDO WHERE HUNDREDS OF ALS RESEARCHERS GATHERED TO SHARE IDEAS

7 EXPANDING OUR PATIENT SERVICES TEAM TO INCLUDE 8 MEMBERS DEDICATED TO IMPROVING THE QUALITY OF LIFE FOR PATIENTS LIVING WITH ALS ALL AROUND THE STATE OF FLORIDA

8 EXPANDING OUR SERVICES FOR SPANISH-SPEAKING ALS PATIENTS IN FLORIDA

9 CELEBRATING THE ONE-YEAR ANNIVERSARY OF THE LEE MEMORIAL ALS CLINIC IN FORT MYERS AND OUR CONTINUED SUPPORT OF THE ALS ASSOCIATION CERTIFIED CENTER OF EXCELLENCE AT MAYO CLINIC JACKSONVILLE

INCREASING THE AMOUNT OF HELP WE OFFER FOR IN-HOME PATIENT CARE THROUGH THE MAUREEN SLATTERY MILLER CARE FUND

OUR 10 BIGGEST ACCOMPLISHMENTS

OF 2010

GIVE YOURSELF A PAT ON THE BACK. IT’S YOU WHO HELPED US DO IT!

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Meet Lily Wimpee, Laurie Ballowe, and

Sherry Murray. These three widows share a strong

common bond – a husband lost to ALS. The trio

had known each other casually through the ALS

community in Jacksonville, seeing each other oc-

casionally at Walks, support groups, or other fund-

raising events. But in July 2010, their friendship

became much deeper.After a mutual friend reintroduced the ladies, they

met for dinner at Sherry’s house. The meeting became cathartic as they shared stories about their husbands’ battles with ALS and the feelings they encountered throughout the journey.

“That dinner really helped us to get over some difficult memories,” Sherry said. “We just felt it was so therapeutic.”

At that very meeting, they started to imagine a group that would offer support for others like them in the area – not for bereavement, but a social group that would give surviving spouses a chance to embark on the next chapter of their lives in a supportive community.

That’s when ALS Association care coordinator, Judie Benwick stepped in to help. Judie sent a letter to those in the area who had lost a spouse to ALS in the last several years, announcing the new group spearheaded by Lily, Laurie, and Sherry.

In September, five women and four men joined for wine and cheese at Sherry’s home. They discussed their shared stories, struggles, and emotions.

“There were sad moments of course, but all in all, it was very upbeat,” Sherry said.

They’ve joined every month since, welcoming new ALS survivors to their group. They call their group The Next Chapter. And in this new section of their life story, they’ve forged special friendships with those that share the experiences of their pasts.

“You’re not going to ever get away from it,” Sherry said when explaining how she felt after losing her husband to ALS. “Now, I feel something good has come from something bad.”

Their vision for the future is to provide support for couples currently experiencing ALS. They’ve served on a discussion panel at an ALS Association support group and have met one-on-one with grieving spouses.

“Without exception, we want to help others,” Sherry said. “We’ve walked down that road, and sometimes you feel pretty lonely. Sometimes you just need somebody to talk to, and we can be there to listen.”

Moving Forward Jacksonville ALS Survivors Form New Support Group

“Sometimes you just need somebody to talk to, and we can be there to listen.”

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Breaking the news to children that someone

they love has been diagnosed with ALS can

be overwhelming and discouraging. Some

people even ask if they should tell children

at all. The answer is a resounding YES! It is

healthy for children not only to understand

ALS, but also to be included in all phases from

diagnosis on. Discussions about ALS will vary

according to the age of the child; however,

make sure the child understands that it is

okay to ask questions and that their concerns

can be shared. Following a few guidelines

can help to ensure that the conversations are

comfortable for both of you.

Be open and honest. Show concern for the

questions the child is asking and follow

the rule you probably taught them – truth

is always the best policy. Keep in mind, no

question is a senseless question. Patience is

crucial so your child feels like he or she can

ask anything and everything that may come

to mind.

Present age-appropriate information in

terms the child can understand. Using

visual aids, like the Florida Chapter’s

Kids Care Packet, can help the child to

better understand feelings, changes, and

symptoms. It also makes the discussion

more interactive which will better engage

the child.

Provide facts slowly so that the child can

digest the information and return with more

questions at a later time. Make sure they

feel like they can come back to the subject

at any time. This should not be a one-time

discussion.

Speak calmly and comfortably. You can

practice role-playing with a physician. A

support group is also a great outlet for

resources and practice.

There are a few questions that many kids

can be expected to ask. That means you

can be ready with well thought-out answers.

However, if you are presented with a

question not listed here that you don’t know

the answer to, don’t become discouraged.

Again, be honest, and tell your child that you

don’t know the answer. This may provide

an opportunity for you to work together to

find the answer. Finally, always remember to

tailor your responses to the age of the child.

STRAIGHT TALK WITH KIDS ABOUT ALS

“IT IS HEALTHY FOR CHILDREN NOT ONLY TO UNDERSTAND ALS, BUT ALSO TO BE INCLUDED IN ALL PHASES FROM DIAGNOSIS ON.”

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WHAT IS ALS?Everyday, our brain sends messages to our

muscles, telling us to do things like walk, talk,

eat, or brush our hair. These messages are

carried to our muscles by nerves – kind of

like wires that make the lights work in your

house. When someone has ALS, something

goes wrong with these nerves. They can no

longer carry messages to the muscles, and

the muscles stop working.

WHAT DOES ALS DO TO YOU?When someone has ALS, it makes it very

difficult for him or her to move, talk, eat, and

even to breathe. ALS doesn’t attack the brain

- only the nerves. So people with ALS can

still see, hear, taste, smell, and feel. They still

know everything that is going on.

WHY DO PEOPLE GET ALS?We don’t know yet why people get ALS

for sure. But a lot of scientists are still

researching this and working hard to answer

all of our questions about ALS.

CAN YOU CATCH ALS?No, you can’t catch ALS like you can catch a

cold or flu. It is not contagious. Nobody can

cause another person to get ALS.

WILL I GET ALS WHEN I GROW UP?Most likely you will not. There is a rare type

of ALS where more than one family member

has it. Scientists and doctors are working

hard to find out why this happens.

DO PEOPLE WITH ALS DIE? Sadly, people living with ALS do not get

better and sometimes do pass away. There

is really no way of telling how long someone

can live with ALS. It may be less than two

years or more than 30 years.

DO KIDS GET ALS?Children do not get ALS. Almost always,

adults get ALS, but there have been a few

older teenagers who have had ALS.

IS THERE A CURE FOR ALS OR A MEDICINE TO MAKE IT BETTER?There is no cure yet for ALS. There is one

medicine called Riluzole that helps a bit.

But there are a lot of scientists and doctors

working hard to find better medicines.

Until they do, someone with ALS can get

help from their doctor to find ways to do

everyday things for as long as they can

so they can be as comfortable and happy

as possible. Your help can also make this

possible.

WHAT CAN I DO?The best thing you can do is to be there for

a person with ALS when he or she needs it.

You could help out around the house when

asked and complete your chores. If you

want to get involved in another way, you can

always help raise awareness by talking about

ALS with your friends at school or raise

money for research and patient services.

Other websites to help kids cope with ALS: The Dougy Center for Grieving Children and Teens :

www.dougy.org Hospice Net: www.hospicenet.org The ALS Society of Canada: www.als411.ca

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March 5South Florida WalkCheck-in 8:30am Walk 10:00am

March 8Tapping Party Fundraiser 5pm

Jacksonville, FL

March 12

Check-in 8:30am Walk 10:00amUniversity of South Florida

March 26Palm Beaches WalkCheck-in 8:30amWalk 10:00am

March 26Piece by Piece Tribute Display

April 2Jacksonville WalkCheck-in 8:30amWalk 10:00am

Cinemark Theatres Tinseltown

April 2

15% of all food sales all day benefi ts the fi ght against ALS

Town Center

April 8Orlando WalkCheck-in 5:30pmWalk 7:00pmLake Eola

April 16

Check-in 8:30am Walk 10:00am

Support Groups

Join us at an upcoming support group to fi nd practical advice on day-to-day living with ALS and a safe place to express your concerns. Everyone is welcome.

Boynton BeachDaytona-Ormond Beach

JacksonvilleThe Villages

Naples

OcalaOrlandoPensacolaTallahasseeTampaTreasure Coast/StuartWestonVero Beach

Visit www.ALSAFL.org or call us at 888-257-1717 for support group dates and directions.

PAID

Permit No 2910

3242 Parkside Center CircleTampa, FL 33619-0907

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