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QUARTERLY NEWS MAGAZINE OF THE ALS ASSOCIATION FLORIDA CHAPTER

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Cutting-edge Research at the Mayo ALS Clinic in Jacksonville

Wendy Bitner Remembers Her Husband, Former RPOF Chair 2012 Walk Season Highlights First Ever Navy Walk Team Inspired By ALS Advocate

SUMMER 2012 1


Staff

AWARENESS

Kim Hanna President and CEO khanna@alsafl.org - ext. 105

Alissa Gutierrez Marketing & Communications Director agutierrez@alsafl.org - ext. 120

CARE SERVICES Christine Bright, MSW Care Services Director cbright@alsafl.org - ext. 130 Heran Sisay, MA Care Coordinator, Greater Tampabay hsisay@alsafl.org - ext. 103 Aimee Freedman, BSW Care Coordinator, Northcentral FL afreedman@alsafl.org - ext. 117 Judie Benwick, MSH, MPH, CHES Care Coordinator, North Florida jbenwick@alsafl.org - ext. 112

ADMINISTRATION Lisa Bublinec Office Administrator lbublinec@alsafl.org - ext. 108 Robin See Bookkeeper rsee@alsafl.org - ext. 104 Gabby Harrison Donor Relations Manager gharrison@alsafl.org - ext 101

Board of Trustees

Patricia Stanco, MHS Care Coordinator, Southwest FL pstanco@alsafl.org - ext. 110

Warren Nelson

Katie Mitchell, MSW Care Coordinator, West Central FL kmitchell@alsafl.org - ext. 116 Loreen O’Brien, M. Div, M. Ed Care Coordinator, Polk, Hardee & Manatee Counties lobrien@alsafl.org - ext. 123 FUND DEVELOPMENT Stephanie Cvetetic Director of Development scvetetic@alsafl.org - ext. 124 Whitney Brew Event Director, and Sarasota Walk wbrew@alsafl.org – ext. 102 Lizzie Danner Walk Manager Jacksonville, Tallahassee ldanner@alsafl.org - ext. 115

Innovation

Patti Palmer Awareness Coordinator ppalmer@alsafl.org - ext. 131

Rhonda Rittenhouse, MA, LMFT Care Coordinator, Centraleast FL rrittenhouse@alsafl.org - ext. 109

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

PRESIDENT’S MESSAGE

Chairman Jim Murphy, Jr. Secretary Board Members Wendy Bitner John Cannistra Kevin Conn Tim Cummings Steve Franks Robbie Gerson Hiram Green Erin Malone Tom McLean Bob Miller Jim Moroney Dewayne Standifer Sandi Torres Leland Talcott Kim Hanna President and CEO David Smith Honorary Board Chair

Diana Perrault Walk Manager Orlando, Tampa dperrault@alsafl.org - ext. 111 Paige McLean Event Coordinator pmclean@alsafl.org - ext. 118

Dear Friends and Supporters, I’ve been thinking about innovation lately. We are fortunate to have a team of the best, most innovative team members working on your behalf here at the Florida Chapter. The people we serve- those living with ALS in the State of Floridatell us what they need, how we should allocate our resources, and where it’s important for the Chapter to focus. And we listen. That’s where innovation comes in. Because it takes innovation to make sure that we are helping the most people we can and stewarding our resources in the best way, and to do that, we sometimes need to get creative. So when we heard we need more awareness, we partnered with Dunn&Co. on our new awareness campaign, “Walk In Their Shoes.” When we heard that Panhandle pALS don’t have access to services, we developed and received funding for “HUGS,” an innovative telephone support group. When we heard that Miami pALS are also underserved by the Chapter, we partnered with VITAS Innovative Hospice Care to help us facilitate expanding support group services. The mission of this Chapter is moved forward every day through innovation. I was reminded of innovation during a recent conversation with Dr. Clifton Gooch at the ALS Multi-Disciplinary Clinic at the University of South Florida. Dr. Gooch explained how USF is committed to becoming a leader in the development of new therapies for motor neuron disease, translating research from their laboratories to clinical trials. Researchers are in the process of organizing a human pilot trial testing the safety and efficacy of umbilical stem cell infusion therapy in ALS patients. Now that’s innovation! And at the University of Florida in Gainesville, the project ‘Neuroinflammation in ALS’ has been conditionally approved for one year by the Association through our TREAT ALS Research Program. The project will rigorously test the role of inflammatory cytokines in ALS disease pathogenesis. These are just two of the many examples of the innovative ALS research that need funding happening in Florida right now. We recently developed an innovative way to spread the word about what the Chapter and how you can help. On September 7th, at 11:15am, and the first Friday every month thereafter (excluding June, July, May, December), we will host our new HOPE and Help Tour at the ALS Clinic at USF. I hope you will join us. The tour is free, lasts just one hour, and includes lunch. Contact Stephanie Cvetetic at 1-888257-1717 or scvetetic@alsafl.org for reservations. With your help and generosity, we can continue to provide innovative programs for those living with ALS, make some much-needed noise about this disease, and fund the innovative research happening in Florida. Won’t you please make your gift today?

The ALS Association Florida Chapter 3242 Parkside Center Circle | Tampa, FL 33619-0907 Toll2Free: 888-257-1717 | 813-637-9000 | www.ALSAFL.org

With Gratitude,

Kim Hanna


Honoring a Husband’s Last Wishes Florida’s Former RPOF Chairman Leaves A Loving Legacy

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ave Bitner was sworn in as Chairman of the Republican Party of Florida on January 15, 2011. For those who saw him take his oath that day, a strapping, 6’3” vision of a man, Bitner appeared to be someone in the prime of his life. Only weeks later, people were shocked to see him using a motorized scooter to tend to party business. “We were on the road for six weeks straight, it was an exhausting schedule,” his wife Wendy says. “We didn’t stop the entire time and visited 64 of Florida’s 67 counties. It was important to Dave.” By early January, however, Dave was experiencing muscle weakness in his legs. Wendy blamed the grueling campaign schedule they’d been on. But by the end of February, Dave required a walker to get around. “We thought it might be diabetic neuropathy,” Wendy said. But Dave’s symptoms continued to worsen. By March, he was using a power wheelchair. And so, as is the case for so many people, Dave underwent a battery of tests to begin ruling out a myriad of other diseases. On April 1, 2011, Dave Bitner, Chairman of the Republican Party of America’s biggest battleground state, was diagnosed with ALS. It was no April Fool’s joke. Despite learning he had Lou Gehrig’s Disease, Dave refused to slow down. Never willing to give in to his body’s slow degeneration, Dave continued to travel the state, doing the job he was elected to carry out. “By July, Dave was a complete quadriplegic, but he refused to slow down,” Wendy says. “He was an inspiration to so many, many people – he just would not let this disease stop him from doing what needed to be done.” In addition to his responsibilities as RPOF Chair, Dave Bitner had a cause that was very important to him – honoring veterans of WWII. He began a “Greatest Generation Tour” to honor Floridians who served in the Second World War. Nearly 250,000 Floridians bore arms in service while the population surged on the home front. Military bases began to expand across the state while others were created to support the war effort overseas. Florida played a pivotal role during the war and was able to emerge as a top influential state in America. Dave planned luncheons in eight cities across the state to not only recognize WWII veterans for their achievements, but to honor and thank them for their heroic sacrifice and service to their country and the great State of Florida. He attended five of the eight gatherings – the last in Orlando on August 29, 2011.

Dave Bitner served as Florida’s GOP Chairman from January to September. During his nine-month journey, he never lost his sense of humor, or his faith and optimism that he could still accomplish much, despite the mutiny his body was waging against him. On September 8, 2011, Dave Bitner passed away at his Monticello home with Wendy by his side. Wendy, along with the Republican Party of Florida, has vowed to complete her husband’s “Greatest Generation Tour,” and will attend its three final luncheons: The Villages, Miami, and one in Tampa during the Republican Convention in August. She will continue to advocate for ALS awareness and the importance of finding treatments and a cure. “The biggest challenge with this disease is that so many people are unaware of what’s happening to them,” she said. “By the time my husband was diagnosed, it was too late.” Wendy hopes that someday soon, there will be a test to determine if a person has ALS or not. “A definitive blood test would have given us more time.” Wendy was recently voted in as a member of the Board of Trustees of The ALS Association Florida Chapter and has vowed to use her connections and those of her her late husband to help people across the state living with Lou Gehrig’s Disease. In her fondest memory of one of the last precious days she spent with her husband, Wendy recounts a trip they were on with Dave’s assistant, Caroline Carswell. Wendy and Caroline were taking turns feeding Dave appetizers as they relaxed after a long, tiring day. A woman approached their table and commented to Dave, “You are the most handsome man I’ve ever seen.” Without missing a beat, Dave replied, “I’m the luckiest man who ever had ALS.” Dave Bitner lost his battle with ALS in September of 2011

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Breaking Down the Mysteries of ALS Right in our own backyard BY ALISSA GUTIERREZ

In a second study with CK-201357, ALS patients took the drug on a daily basis and the results were again encouraging. It is hoped that a larger study will be launched for the next stage of testing conducted by Cytokinetics. According to the company, Cytokinetics has met with the U.S. Food and Drug Administration’s Center for Drug Evaluation and Research’s Division of Neurology Products and with the European Medicines Agency to discuss its

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progress in the development of CK-2017357 as a potential

long with state of the art symptom management at

treatment for patients with ALS and the company’s plans

the Mayo Center of Excellence ALS multidisciplinary

for its further development, including potential registra-

clinic, the ALS clinic at Mayo Jacksonville continues to

tion strategies. Cytokinetics is assessing options that

make strides in ALS research and the development of

may enable the initiation of a registration program for

new therapies, testing promising new medicines for Lou

CK-2017357 and anticipates having additional interac-

Gehrig’s Disease.

tions with U.S. and European regulatory authorities during 2012.

Kevin Boylan, M.D., who formed the clinic seven years ago and serves as its medical director, says the ALS research program at Mayo includes many facets and is unusually broad in terms of range. “Our research program focuses on ways to try and identify new and more effective medicines and to figure out how and why people get ALS,” he said. A NEW DRUG TO IMPROVE MUSCLE STRENGTH Of particular interest, Mayo recently participated in drug studies sponsored nationally on a small scale by Cytoki-

One of the most exciting discoveries in the 71 years since Lou Gehrig died has been the identification of a genetic mutation that causes ALS and frontotemporal dementia, or FTD, by a team led by Dr. Rosa Rademakers at the Mayo last fall. The two disorders are linked.

netics, Inc. This study evaluated the effects of the drug,

Speaking at the 2012 Experimental Biology Annual Con-

CK-2017357, which selectively activates the fast skeletal

ference in San Francisco in late April, Cytokinetics’ Vice

muscle troponin complex by increasing its sensitivity to

President of Biology and Therapeutics, Fady I. Malik, MD,

calcium and appears to increase skeletal muscle force in

PhD, FACC, said “We are pleased that these preclinical

response to neuronal input, delaying onset and reducing

data demonstrate the potential of CK-2017357 in resis-

the degree of muscle fatigue. In short, the drug is intended

tance of fatigue in animal models.”

to improve stamina for physical activities. Dr. Malik added, “This presentation, in combination with Mayo Clinic Florida was one of a small number of U.S.

the data presented at the 64th Annual Meeting of the

sites involved in the first testing with ALS patients a year

American Academy of Neurology, point to the potential

ago.

role that CK-2017357 may have in improving function and decreasing limitations associated with fatigue in patients

According to Dr. Boylan, “In the first study, we saw an

with debilitating diseases of impaired muscle function,

indication that this drug might be promising,” he said.

such as amyotrophic lateral sclerosis.”

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medications to be evaluated in less time and with fewer DRUG TO HELP MOOD AND BEHAVIOR ISSUES

patients than is now required, making drug development

Mayo Clinic Florida is also involved in a study to see

for ALS more attractive to the pharmaceutical industry.

whether a medication already available for treatment of pseudobulbar affect (PBA) in ALS may have positive ef-

The Mayo Clinic Florida ALS Center has been work-

fects on behavioral symptoms that can occur in ALS. PBA

ing with researchers at the University of Florida on

is characterized by involuntary, sudden, and frequent epi-

a promising new ALS

sodes of laughing and/or crying, typically out of proportion

biomarker called neurofilament heavy

to a person’s underlying emotional state. Some people

form. The level of neurofilament in

with ALS may also develop changes in personality and

blood and spinal fluid may provide

behavior that can strain interpersonal relationships, and

an indication of how rapidly ALS is

more treatment options for this are needed.

progressing.

“This drug may offer additional benefits in people with

According to Dr. Boylan, the

ALS beyond what has already been established for this

multi-center collection of blood

drug in previous studies,” Dr. Boylan said.

and spinal fluid for biomarker research is exciting for two

RESEARCH TO DEVELOP BIOMARKERS FOR ALS

reasons. First, this is the first large scale ALS research

Mayo is working with a small number of other ALS centers

effort to collect blood and spinal fluid samples over an ex-

in the U.S. to collect blood and spinal fluid samples every

tended time period, and will provide a samples from PALS

four months from people with ALS. These samples will

with forms of ALS that represent different sites of onset

serve as a repository of stored samples for future research

and rates of progression in order to identify biomarkers

to identify markers in blood and spinal fluid that can be

linked to the presence of ALS and its rate of progression.

used to track nerve damage in ALS. Dr. Boylan says the

Second, the samples collected will allow scientists to com-

study will eventually encompass samples from more than

pare findings in blood and spinal fluid in order to look for

200 people with ALS.

biomarkers that could make it possible to determine how someone is responding to treatment.

“This study will allow scientists to identify markers, also called biomarkers, in blood and spinal fluid samples, pro-

“This will help get more interest from pharmaceutical

viding them with more precise measures for testing ALS,”

companies to develop new drugs for ALS,” he said. “The

he said, “It is hoped that biomarker research will lead to

development of new ALS biomarkers is an essential step in

a direct test for this disease and tests to measure ongoing

facilitating development of new ALS drugs.”

motor neuron damage.” People with ALS who donate blood and spinal cord fluid Currently, there is no direct test to measure nerve damage

are making a very important contribution to advancing

in ALS. The only way now to track progression of ALS is by

research on this disease for many years to come, and their

measuring muscle strength or determining how long a per-

help will support a large number of future ALS studies.

son lives. These measures require long follow up intervals in order to reliably determine how a person is progressing,

RESEARCH ON GENES THAT CAUSE ALS: A

and in the case of an experimental drug, whether the drug

“GAME CHANGER” IN ALS RESEARCH

is having an effect. Because of this, drug studies for Lou

One of the most exciting discoveries in the 71 years since

Gehrig’s Disease have to be done on a large scale and are

Lou Gehrig died has been the identification of a genetic

very expensive. This is an important reason why pharma-

mutation that causes ALS and frontotemporal dementia, or

ceutical companies may be reluctant to invest in research

FTD, by a team led by Dr. Rosa Rademakers at the Mayo

on potential new medications for ALS. Identifying direct

last fall. The two disorders are linked.

markers of nerve damage in ALS that can be detected in the blood or spinal fluid, could offer a more effective way

“There is actually a small piece of DNA that in healthy

to assess nerve damage. This could allow experimental

people is only repeated two to twenty times, but in patients

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with ALS and FTD, the same piece is now repeated hun-

the starting point of the disease to late stages when large

dreds, even thousands of times,” Rademakers said.

numbers of nerve cells have been lost allows scientists

This genetic defect explains a substantial number of pa-

identify potential targets for drugs slow or stop it.

tients with familial FTD and ALS. “More importantly, this is the only common gene that has been found that clearly

Dr. Boylan explained that an additional component of this

affects both diseases,” Dr. Rademakers said. Why some

research being done on the brain and spinal cord tissues

patients develop FTD and others ALS, despite carrying

donated by deceased ALS patients is critical to finding a

the same genetic defect, remains unknown and will be an

cause, treatment and ultimately a cure for the disease,

important area of future research.

because it allows confirmation of what is actually happening in tissues affected by ALS.

“This is a game changer in ALS research,” Dr. Boylan said. According to Dr. Boylan, the discovery of Chromosome 9 is

“The discovery of the C9ORF72, “Chromosome 9” gene ex-

important for three main reasons:

pansion by Dr. Rademakers’ group involved DNA prepared from blood samples from hundreds of local patients, as well

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Its Commonness – this mutation is responsible

as the brain and spinal cord tissue from deceased patients

for more familial forms of ALS than any other known gene

who donated their organs to science,” he said. “These

– at least 30 percent of all people with familial ALS.

donations, were very important in beginning to understand how the C9ORF72 mutation leads to ALS.”

2.

The Effects of the Mutation can Change from

Person to Person – not everyone with this gene will get

And while continuing to made strides in research is a strong

ALS. We don’t know why this mutation causes disease in

component of their work, Dr. Boylan stressed that funda-

some carriers and spares others..

mentally, The ALS Clinic at the Mayo Clinic is dedicated to providing the best care possible to people with ALS.

3.

The Link Between Frontotemporal Dementia

(FTD) and ALS in Some Families - some people with ALS

“A strong component of the work we do here is to figure

who had previously been diagnosed with sporadic ALS, in

out why people get this disease and how we can treat it,”

fact may have had familial ALS. It turns out that ancestors

he said. “But first and foremost, we want to be a resource

with FTD in their family (not ALS), passed on the gene.

for people with ALS, helping them to live independent lives

This gene shows us that the risk of familial ALS is not

despite this diagnosis.”

solely based on having ALS in the family history, but that dementia, specifically FTD, can also pose a risk for ALS.

Much of the research being conducted at The ALS Clinic

Now that testing for the C9ORF72 expansion is available

at The Mayo Clinic is funded in part by The ALS Associa-

as a clinical test, Dr. Boylan cautions people who might

tion Florida Chapter, with donations from people like you.

consider having the Chromosome 9 genetic test.

Please consider making a gift today so that we may keep the momentum going at Mayo Clinic and other ALS Centers

“It is best to have the test performed through a physician who can interpret the results and refer a patient to a genetic counselor if necessary,” he said. “There are very broad implications with testing of this sort and people should have access to as much information as possible.” Each discovery of a new gene linked to ALS adds to what is known about the causes of familial and sporadic ALS. Finding out how a gene mutation leads to ALS can reveal the changes that take place in the brain and spinal cord from

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and Clinics throughout our state.


keeping up with

ALS RESEARCH BY PATTI STANCO

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n a world of 24/7 news cycles and the immediate availability of information, it’s getting easier – and yet somehow more challenging – to keep up with what’s newsworthy. What sources have the most reliable information? What’s the best way to keep up? Facebook and Twitter allow people to instantaneously access everything from fun, entertaining tidbits to important, new information and everything in between. Following are a few valuable, reliable resources to check, “like,” and “follow” to stay up to date on ALS research. The ALS Association Florida Chapter (http://www.alsafl.org/research/) The ALS Association web site research tab has links to the latest news, upcoming webinars, and archived items. This is also the number one spot to check for advocacy action items – a key part of advancing the research agenda for ALS. NEALS Consortium (http://www.alsconsortium.org/) The Northeast Amyotrophic Lateral Sclerosis Consortium is a collaborative organization of ALS research scientists. Check their website for informative webinars and updates. Also available through NEALS is a clinical trial “concierge” to assist interested patients. ALS Untangled (http://www.alsuntangled. com/) When suspicious emails arrive touting or warning about something that seems too strange to be true it’s a good idea to check

a reference web site like “Snopes” to get the facts. ALS scientists have created a similar resource for ALS called “ALS Untangled.” If patients come across purported cures or treatments for ALS - the facts can be checked here. The researchers welcome new inquiries and list ongoing and completed investigations on the web site. JHU Packard Center (http://www.alscenter.org/ news/newsletter/archive.html) The Robert Packard Center for ALS Research at Johns Hopkins University has an electronic newsletter available online. Visit the web site to discover the numerous ways to subscribe. DoD CDMRP – ALS (http://cdmrp.army.mil/ alsrp/highlights.shtml) The federally-funded Congressionally Directed Medical Research Program for ALS at the Department of Defense posts highlights of their research. Florida Clinical Research Sites: Mayo Clinic – Jacksonville (http://www.mayoclinic.org/medicalprofs/monitoring-treating-als. html) University of South Florida - Tampa (http:// health.usf.edu/medicine/neurology/als/index. htm) University of Miami (http://www.miami-als.org/ research.htm#clinical) 7


THANK TO ALL OUR TEAMS!

For making our 2012 Walk to

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YOU!!!!

Defeat ALS across Florida a tremendous success!!!!!

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2012

WA L K

THANK YOU FOR STEPPING UP!

presented by Quantum Rehab (A Division of Pride Mobility Products)

Thank you to all of our wonderful sponsors!

Ride Away Jet Blue Mobility Express (Sun City Center Location) Mobility Express (New Port Richey Location) ADP Brumos Motorcars, Inc. Copytronics Key Buick-Hyundai Suntrust Bank The Parts House Seven Bridges Grill Cinemark Theaters Aon Hewitt CSX D&D Garage Doors Edyth Bush Charitable Foundation 10

Gray Robinson, P.A. Pink Sneakers Productions James Rudolph, P.A. Orlando Improv Moe’s Southwest Grill Bush & Augspurger P.A. Double Tree Hotel, Tallahassee Boar’s Head Dimensional Insight Auto Mobility Sales C&C Insurance Big Truck Rental Respicare of South Florida Magic 102.7 97.9 WRMF


2012 Walk Top Fundraisers: Ft. Myers Virtual: Hilde Heard $9,165 Jacksonville: Alecia Jones $44,925 Orlando: Logan Wilemon $9,728 Palm Beach: Harold Greenberg $32,226 Sarasota: Kevin Swan $29,550 South Florida: Linda Aversa $13,043 Tallahassee: Caroline Carswell $9,580 Tampa: Chuck Hummer $16,170

2012 Walk Top Teams:

Sarasota:

Ft. Myers Virtual:

Swan’s (No Limit) Soldiers $75,489

Hilde’s Herd $9,165

Pierre’s Pals - Team Juntos $12,155

Hilde’s Hair Heard $4,500

Hicks Oil Company $11,985

Jacksonville:

South Florida:

Team Project 2-4-20 $45,175

Team Larry Fein $15,022

Scott-McRae Group Tip’s Trotters $28,509

Team Linda $10,689

The Walking Eagles $21,570

Bread Basket $9,321

Orlando:

Tallahassee:

Nina’s High Rollers $21,646

Republican Party of Florida Walk for Dave Bitner $11,076

Keith’s Crew $12,790

Stretching Your Life $8,916

Roger’s Rally $9,768

Team Jamo $8,675

Palm Beach:

Tampa:

The Penguin Team $32,591

Miles for Michael $17,828

Ade’s Allies $14,385

Team Panama Canal Museum $17,160

P’Nut’s Pals $11,755

Got A Cure? $13,555

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WALK OF HONOR Naval Group Honors Local Journalist with ALS

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embers of the NAS JAX Second Class Association

Johnson, author of four books and a writer with the

and Junior Sailor Committee recently participated in

Jacksonville Business Journal for many years, has had

the Walk to Defeat ALS in Jacksonville, as the first military

ALS since 2010. She became acquainted with the staff

team in the history of this event.

at NASJAX 10 years ago, while working closely with the Public Affairs Officer, on articles about the base. Former

Their team, “Anne’s Goal: United States Navy (FRCSE:

Commanding Officer at Naval Air Depot JAX (now FRCSE)

Fleet Readiness Center Southeast),” was named for Anne

remembers one article well.

Johnson, a local journalist with ALS. The team was led by Team Captain PO O’Neil Smile and Co-Captains Karl

“Anne wrote a brilliant article right before the war in Iraq,

Yeakel and PS2 (SW) Robert Chaney II.

showcasing the J-52 engine recovery,” he said. “At that time, Depot staff was working around the clock on this

Naval Air Station Jacksonville (NAS JAX) is the largest

critical aircraft piece, and she really captured the heart

Navy base in the Southeast region and is the 3rd largest

and soul of the teamwork and dedication that was involved to get this engine ready for the EA-6B Prowler - a crucial tactical requirement for the war.” According to Yeakel, after the article was published, Johnson gained the respect of everyone at the Depot, and her dedication to getting the story right was never forgotten. He added, “Anne’s writing, time and effort put into this article really meant a lot to all of us who were working night and day. She was very supportive of the tremendous effort we were putting forth and she became a true friend.”

Anne Johnson lost her battle with ALS in June. She was a tremendous advocate for our community and she will be forever missed.

When Yeakel learned of Anne’s illness, he knew he wanted to do something to help. He began participating in the

base in the nation. It is a master air and industrial base,

Jacksonville Walk to Defeat ALS, walking for Anne’s

and supports U.S. and allied forces specializing in anti-

team. Eventually, the Public Affairs department at FRCSE

submarine warfare and training of the best aviators in the

decided to form a team of their own in honor of the friend

world.

they had known for more than a decade.

Military veterans, regardless of branch of service, era in which they served, or peace or wartime service, are twice as likely to be diagnosed with ALS. Currently, the connection is unknown. 12

FRCSE Team members included: Karl Yeakel, Former Commanding Officer Naval Air Depot Jax (now FRCSE); Teresa White, Public Affairs Officer; Captain Robert Caldwell, Commanding Officer; John Kimmel, Executive Officer; Master Chief Shepherd; Master Chief Landsittel; Senior Chief Rodriguez; Petty Officer O’Neil Smile; and Petty Officer Robert Chaney. The team hopes to increase participation next year.


STORIES THAT INSPIRE US: A CHRISTMAS SURPRISE My wife Laura and I love going to Disney. All my life, I

The look on their faces was priceless. After the parade,

have secretly longed to be a Toy Soldier in the Disney

we were met by several high ranking cast members. When

Christmas Parade. At one time, I had even planned to

they opened the gate for us to go back we were greeted by

pursue this “career” post-retirement. One day, in a casual

a formation of the entire Toy Soldier cast along with Santa

conversation with one of her friends, Laura revealed my

and the Fairy Godmother. WOW!!! Laura told all of them

secret, which resulted in a series of phone calls from

my story and then they posed for pictures with us. Then

friends to the upper management at Disney.

Mickey and Minnie joined us for more pictures. WOW!!!!

To my delight, we were given a VIP viewing of the parade

Finally, I was named Special Toy Soldier Leader and the

and a meet and greet with some of the soldiers. This

trumpets played a special rendition of We Wish You a

would have been amazing enough, but as we were in our

Merry Christmas. WOW!!!!! It was a magical day! But it

seats waiting for the parade to begin, we were approached

all paled in comparison when my son Donovan said “my

by a nice lady who introduced herself as the secretary of

Christmas wish is that my daddy will live forever. “

the Vice President of the Magic Kingdom. Laura intro-

Then my daughter Nicole posted on her Facebook page

duced me and our children, Donovan and Nicole. The lady

that the best thing in the world was watching her dad’s

explained that she understood that I liked the toy soldiers.

dream come true.

Laura shared my story of wanting to be a toy soldier. The woman said she had never met a toy soldier and that she

I can say with an abundance of thankfulness that I am

would join us after the parade to meet some for herself.

truly blessed.

The parade was great as always. When the Toy Soldiers

God Bless,

came by each line turned and saluted me. WOW!

Dave Maynard & family

At the end of the parade, when Santa came by, he shouted out. “HO HO HO Merry Christmas. Donovan, I hear you have been a good boy. Nicole, Merry Christmas.” WOW!!

Editor’s Note: Dave Maynard passed away on April 25th. Our thoughts and prayers are with his family.

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National ALS Advocacy Day and Public Policy Conference Florida Constituents Make Their Voices Heard to Lawmakers More than 25 Florida delegates attended the 2012 National ALS Advocacy Day and Public Policy Conference in Washington, DC in May. Thanks to advocacy efforts, the federal government (now the single largest source of ALS research funds) continues to provide resources to make advances in ALS research possible. The tireless efforts of pALS, cALS, families, volunteers and staff has resulted in monumental accomplishments. In total, more than 900 ALS Advocates, 90 people with ALS and 20 military veterans with ALS showed up in our nation’s capital. They had one goal: to urge Congress to step up the fight for a treatment and cure. That was the scene at The ALS Association’s 2012 National ALS Advocacy Day and Public Policy Conference held in Washington, DC May 13-15. The empowering three-day event included people touched by ALS from all walks of life and from nearly every state in the country who joined together in the nation’s capital to make a difference. And that’s exactly what they did!

Warren Nelson (Board Chair), Rep. Ted Deutch, Kim Hanna (President) and Tim Cummings (Board Member)

FACTS FOR FLORIDA PALS There are five ALS Centers in Florida: The Mayo Clinic, Jacksonville; ALS multidisciFlorida Chapter

plinary Clinic at Shands, Jacksonville; University of South Florida ALS Clinic, Tampa; Suncoast ALS Clinic, St. Petersburg; and Lee Memorial Health Systems ALS Clinic, Ft. Myers. The Florida Chapter has loaner closets throughout the state for medical equipment dur-

Florida Chapter

ing all stages of ALS. Planning a vacation? Let the Florida Chapter help you connect with an ALS Association

Florida Chapter

in your destination state. We may be able to help make your trip more comfortable. Find a support group in your area and connect with other families living with ALS. Go to

Florida Chapter

www.alsafl.org. 14


Saturday, November 3, 2012 | Register Today!15 RiDeToDefeATALS.oRG | 11.3.2012 www.ridetodefeatals.org


Making Positive a Way of Life A Daughter Determined to Make a Difference for her Mom

H

eidi Lehman didn’t see her life going quite this

Penny decided early on that she wanted to try alternative

way. The 33-year-old Speech Pathologist has re-

treatments for ALS, including stem cell therapy in Mexico.

cently given up her Aventura apartment to move back in

But instead of halting the disease’s progression, her daugh-

with her parents. The move home wasn’t something that

ter feels the opposite result occurred.

that any of the Lehman family would have envisioned five years ago when Heidi’s mom, Penny, began experiencing

“My mom’s ALS progressed rapidly after she received stem

symptoms that wouldn’t go away.

cells in Mexico,” Heidi said. “She walked into the airport for that trip with my dad, and six months later she was in a

Penny Lehman didn’t tell her children that she feared

wheelchair.”

she had a neurological problem – she didn’t want to burden them, it wasn’t her style.

According to Dr. Clifton Gooch, Director of The ALS Clinic at The University of South Florida, “Patients with ALS natu-

“In the beginning, only my dad knew what was going on

rally seek novel treatments, and sometimes on their own.

with my mom’s health,” Heidi said. “We didn’t find out

There are many different kinds of stem cells, many different

until she’d been living with symptoms for quite some

ways to prepare them and many different modes of admin-

time.”

istration, any or all of which could make the difference between benefit and harm,” he said. “Well-designed, sci-

But eventually, after her diagnosis with ALS, Penny

entifically sound clinical trials are the only way to find out

Lehman knew it was time to talk to her family.

whether a specific stem cell treatment approach will work in

16


ALS, and those trials are just now getting underway. “

we want her to retain as much of the joy from her pre-ALS life as possible.”

Penny, a life-long exercise enthusiast, still works out with a trainer twice a week. But instead of aerobic exercise and

Heidi adds that her mother has a very positive spirit, which

heavy weight training, she now focuses on attempting to

is in line with the holistic treatment methods the family

keep her muscles from weakening.

has embraced. The focus these days is on maintaining Penny’s quality of life.

She’s also incorporating holistic healing methods into her life, including Reiki, distance healing and daily coconut oil

Heidi and her family have participated in the South Florida

consumption.

Walk to Defeat ALS for many years. Three years ago, she learned about The Ride to Defeat ALS.

“We really think the coconut oil has helped my mom,” Heidi said. “We add pure virgin coconut oil to her food

“I hadn’t been on a bike in more than five years,” she said.

every day and she has actually had improvement in her

“But I knew it was something I wanted to do.”

muscle strength.” Heidi signed up for the Ride and began fundraising. This Heidi said that Penny’s trainer mentioned that Penny is

will be her third year as a 25 Mile Challenge rider.

now able to lift her legs much higher than before and her

“I ride for my mom, but also for all the other people with

ability to swallow food seems to be improving.

ALS,” Heidi said. “We desperately need to drive more money into research – it’s the only way a cure will be found.”

According to Dr. Gooch, “Maintaining nutrition is one of

Heidi realizes as well, that her mom is more fortunate than

the most important things anyone with ALS can do to

many people struggling with Lou Gehrig’s Disease.

maximize muscle health. Good nutrition benefits both function and survival in ALS, as documented in many

“We can afford many costly things that my mom needs,”

studies. Coconut oil is safe and is a great source of some

she said. “But we know not everyone has that ability. The

of the essential building blocks for muscle and of calories

Ride helps people in Florida get the care and the equip-

in general, so it has the potential to improve nutritional

ment they need to maintain quality of life.”

balance and benefit muscle health,” he said. “A recent comprehensive analysis of the published world research on

And so, in November, Heidi will once again make the drive

coconut oil by the Johns Hopkins group did not find ab-

to Florida’s west coast, to ride for her mom and for the

solute proof that it helped ALS patients, but did find that

hope that someday a cure will be found.

some of the properties of coconut oil had potential.” To sign up for The Ride to Defeat ALS, go to And, coconut oil is relatively inexpensive and fairly free

www.ridetodefeatals.org.

from side effects. The most common side effect Johns Hopkins researchers found was diarrhea. Considering that most ALS patients struggle with constipation, this may be a somewhat welcome side effect, they concluded. Heidi says she is her mother’s “cheerleader,” keeping her attitude positive and making sure that her lifestyle remains as normal as possible.

“We go out to dinner every Friday and Saturday night with old friends,” Heidi said. “My mom enjoys getting out and

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Gifts to The ALS Association Florida Chapter We would like to thank our generous donors for their support. These contributions help us provide vital patient services, programs, and fund worldwide research.

MEMORIAL GIFTS Gifts made in memory of a friend or loved one. Gifts made between 1/1/12-6/30/12. Richard Anderson - Trudy Harris, John Keys, Lori Schwab and Bill McCullum Robert Arntsen - Scott Arntsen given through Give With Liberty Employee Donations Larry Ballowe - Andrew Clarke Gordon Beckwith - Wilbur Belt Raymond Bell - Nancy Bell given through the Raymond J. Bell Memorial Fund at Fidelity Charitable Gift Fund Emory Berman - H. Virginia Crane, Dr. Jill Gluskin, Caren Kowalksy and the Lady Birds of On Top of the World Janice Pero, Adella and Sidney Sherman Howard Berntsen - Roger Payne, Shorecrest Preparatory School, Tepper, Tepper & Koprowski, CPAs, PC Norene Bini - Eugene Keesler Nancy Bound - Ed Bound Russell Brandi - Josephine Brandi given through the Give With Liberty Employee Donations Linda Bridges - United Stationers Charitable Foundation Asa Brown - Catherine Corcoran given through the Johnson & Johnson Matching Gifts Program Stephanie Bunton - Rodney and Rose Ann Bartholomew, Sheryl Ebeoglu, Sara Morrison, Dr. Ramesh Narang, Trudy Simmons, Laura Stukbauer John Burgio - Loretta Kowalski Robert Burton - Gail Sevestre Kathleen Cannistra - Michael and Kathleen Martella Peter Carr - Lenore Brozik, Fanny Tovi Charles Carter - Terry Bass, J. William and Nancy Blanford, Ann Dziadon, Jeffrey Gott, Belinda Hartwell, Marvin and Gertrude King, Richard Robertson, Doris Talley, Jennifer VedralBaron, Kirk and Midori Young Gene Clarke - Ronald and Pauline Hubert Hobart Cockreham - Bruce and Heather Cohen, Beverly Moses Florence Cohen - Joyce Onorato

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Abamont Manny Cohen - Faye Quigley, The Newmark Family Trust David Colquett - Joey and Connie Colquett Alphonse Condon - H.B. and Sally Horner Carolyn Corlew - Russ & Betty Burgette,Thomas and Carol Collison, Mary Coyro, Phyllis Dodge, Mary Greer, JoAnn Gromlus, Terry and Judy Klein, Chuck & Claire Lynch, Marylu Marshall, Patrick and Carolyn McKeown, Sue and Wally Muscott, Bill & Pam Peter, Teri Rathgeb, Barbara Samford, Ruth Shipp, Arden & Sandy Spitzer, Judy Stahl,Terry Wynter Auto Service Center, Inc., John & Linda Vredenburg Barbara Cummings - Chip Cummings Don Curts - Robert Parks Faustino Davila Pabon - Modesto Donato John D’Estrada - Xcel Energy Foundation Matching Program Gloria Dougherty - Charles Dougherty Condit Dow - Paul and Caroline Desoye, John and Concetta Hugenberg, Deno and Elizabeth Marino, David and Linda Packard, Gary Scarafoni, Susan and Mac Smith Priscilla Duis - Sherry Murray Don Edgerly - Paul Bruno, Fort Lawn Loopers, Frederick and Mildred Kaeser, Russell and Patricia Lovaas, Megson & Heagle, Betty Overholt, Cheryl Renton-Lange, Thomas and Dianne Sayers, Uriel Lodge #24, Roy and Cynthia Wittich Ross Edward - Marilyn Wine Robert Edwards - Georgia Edwards Mel Einhorn - Lester and Eleanor Einhorn Lynn Ferguson - June Rasmussen Audry Flamberg - Dr. Howard and Hilary Pasekoff Sara Flores - Sarah Dion Bill Galasso - Bob Bentert Mary Gessells - Bruce and Shelly Albury, Denice Alles, William Bailey Carolyn and James Batwinis, Cathedral Parish, Michael Davis, Nina Davis, Dr. Jack and Sue Giddings, Ira Greil, Marylou Harris, William and Irene Heath, Drs. R. Duane and Nancy Holland, William and Valerie Kline, Dianne Krueger,

Mary Lotshaw, Eileen Lovensheimer, Barbara MacWilkinson, Patricia McDonnell, Michael and Estelle McKenzie, Mary Ann Moone, Sallie Mudd, Alice O’Connor, Edward and Trina O’Dell, Michael O’Dell, Janice Paperny, Ray Glass Batteries, Inc., Mary Jo Schuer, Kimberly Shacklock, Julie Skeen, Silvia Stevens, The Browning Agency of Ponte Vedra, J. Eugene and Martha Watson, William Young Norma Gonzalez - Ronald Darrigo Thomas Gorman - Gwendolyn Haertling Michael Govostes - Juanita Beidelman Dr. Paul Goyette - Michael and Edith Campbell, David and Joy Chartier, Don and Leona Collins, Gerard and Celinda Corbeil, Carmine and Susan DeStefano, Ellington High School Cheer Fund,Timothy and Alma Falvey, Duane and Kathy Frederick, Lizabeth Gentry, Elise Goyette, Tina Grab, Lenore Gudmundson, Frank Jones, Joseph and Claire Langevin, Maureen McDonough, Pat Phillips, Ronald and Joanne Poludniak,Mary Pope, John and Patricia Van Deusen John Gross - Beth Fromer William Gulmy - Vaughn and Jeanne Cornele, Marvin DeArmon, David Fee, Roger and Dee Hicks, Susan and Terry Krinn Martha Halling - Crystal, Mariah & Reece Gilbert Lois Hartog - Dorothy Ozaroff Richard Hellstrom - Anna Donovan, Ted and Van Marie Haburn given through Alexandra Hellstrom, Mary Jo Miller, Amelia Williams Richard Hickman - Calvin and Mercedes Bagley, Helen Beeler, Janice Bennafield, Liliam Betancourt, Mark Callahan,Norman and Mary Chastain, Denise Coburn, Cynthia Cox, Charles and Dorothy Curry, Morris and Paula Grover, Glenn and Carole Hooper, Carolyn Jones, Jean Leone, Kenneth Licata, Amanda Maynor, Robert Mitchell & Catherine Devanney, William Mitchell, Sandy and Arlen Mohler, Paddy Moses, Jean Palermo, Brian and Bethel Poe, Lauren Segers George and Ann Smith, John and Martha Thorington, David Tracy & Janeen Trevillyan, Tish Wold


Carole Howard - Deborah Mirabello given through Highland Capital Partners Marianela Iza-Rodriguez - Damaso Rodriguez Doug Jacobs - Roberta Berglund Moe Jacobson - Joseph and Linda Aversa, Dr. Paul and Eileen Swaye Anne Johnson - Rita Friedman, Sherry Murray, Patricia Williams Charles Johnson - Joy Kagele Keith Jones - Janice Jones, Kris Harwell James Kay - Diane Kay Leonard Kliegman - Lillian Kliegman Marilyn Kupperman - Owen and Barbara Anchell, Atwill, LLC, Naomie Bossen, Spence and Nancy Edwards, Judith Greenfield, Stanley and Sharon Kantor, Langley & Rust, PA,Sherry Murray,Bernard and Ruth Nachman, Herbert and Rose Plotkin, Phyllis Portnoy, Rochelle Shainbrown, Mark and Bryna Singerman & Libbye Gordon, George, Phyllis & Ross Strumlauf, Fuller and Judith Tresca, Dr. Allison Vitsky, Sandra Weiss Russell Lathrope - Carl and Emily Boroughs, Jack Cook, Nita Denton, KBB, LLC, John Pilny Kathleen LeBarron - Nelson LeBarron Susan Lebo - Carol Tresca Lee Lieb - Henry and Gail Squires Harry Lillard - Bernard and Clara Giancola Daniel Lipman - Sheila Lipman Neil Loftus - Patricia and Jeffrey Kraws Julie Lusson - Leslyn Rigoni Derrick Maddox - Assurant Foundation Matching Gifts Lee Malmon - Naomi Berman Robert Martini - Debbie Martini John Masciantoni - Joseph and Renee De Lengyel, Margo Masciantoni, John Pendergast, Bob and Maureen Tummillo, Gloria Wheat William Maybrook - Samuel Nagler David Maynard - Norma Maynard, Janet Singleton Terrence McMullen - Cooper and Joyce Agent, Stephen and Gayle Banks, Donald and LaVonne Blackburn, Ben and Lisa Bradburn, Larrie and Gretchen Calvert, M. Christine Cooke, Thomas and Sally Daly, Gerald and Polly Dirvin,Sandy and Mike Focht, Bonnie Ford, Raymond and Ruth Handel, Robert and Dorothy Hood, Marjorie Horner, Chauncey and Patricia Kennedy, Jean Lusted, Grace McMullen, Jacqueline Orth, Robert and Theresa Regan, C. Frederick and

Sharon Rolle, Ray and Jan Ross, Karen Rothberg, Eugene and Marilyn Schutt, Norman and Burdell Sherman, Glenn and Charon Sisler, Jack and Suzanne Sullivan,Wendy Wise, Thomas and Valerie Wright Barbara Medina - Bernardo and Alicia Diaz Matthew Medlin - Spencer and Carol Davis Tammy Monty - Caroline Riley Mark Moore - Arlene Speakman Vincent Morelli - Earl and Sherry Barrett Phyllis Mund - Blanche Erickson, Susan Frisby, Dorothy Hartman, Kenneth and Charlotte Hoekstra, Lake Worth Men’s Golf Association, Joyce Newton, Roger and Debra Patterson, Joseph and Dale Salimeno, John and Joan Thomas, Betty White Guillermo Munoz - Elizabeth Higgins Herman Nystrom - Hannah Atkins Rita Ovadia - Abe Ovadia Richard Pascarella - Linda Peters Jonathan Plaut - Bonnie Ury Kittyann Pozo - Miriam Blankenship Robert Ray - Danielle Flenniken Deborah Renney - David Selznick David Robertson - Joseph Weber Robert Routh - Rebecca Routh Sidney Rovner - Gwendolyn Rovner Sheila Rubin - Renee Barson, Martin and Estelle Baum, Beulah Bishop, Alice Cohen, Gilbert and Beverly Cohen, Leonard and Selma Elterman, Bryna Friedman Cohen, Bruce and Lynn King, Rosa Maria Mancilla de Ramirez, Yetta Parker, Ronald and Jacqueline Reckseit, Jerry and Clarice Somerdin, Surfin’ Seniors, Howard and Linda Topper, Aaron and Bernice Weisgrau, Jerome and Florence Zales Neil Rudin - Julia Atlas, Cheryl Rudin Margaret Ruggeri - Boca Raton Regional Hospital, Elaine Reese Reinerio Sanchez - Gisela Sanchez Harold Sanders - Jennifer Sanders Elaine Sevin - Patricia Strongin Judith Shaller - Linda Spalding Sidney Sherman - Naomi Berman Dae Sun Shin - Jung In Kang Carole Siewert - William and Ursel Hendricks Ronnie Spurgeon - Lola Spurgeon Eva Stephens - Pamela Lewis, Samuel Stephens, Janice Thomas Jack Stevens - Dr. Paul and Eileen Swaye Robert Strandberg - John and Louise Dembrowsky, Stephen Harsanyi & Elaine Emslie Ken Study - Annie Fetzer,

Georgetta Jones, Jon and Carolyn Study, Mary Study, Jon and Carolyn Study Dr. Terry Tippin - Billye Wallace LeRoy Tual - Martha Tual Gerald Turianski - Marie Turianski Lee Ann Turtletaub - Kevin Avent, Carol Berman, Andrea Berman, Naomi Berman, Craig Brown Helmut Van der Sanden - Brasota Dutch Society, James Deckert, L. Farrell, Mark and Tracy Fjeldal, Tom and Nancy Flanagan, Linda and Ron Garvin, Brian and Susan Jackson, Maxwell Jonah, Joy and Frank Kagele, William and Maggie Meentemeyer, Linda Moody, Alan Nance, Michael Bell and Terra Pryer-Bell, Douglas Rice, Suzanne Rosenbaum, Julie Rosenkrantz, Lucille Smith, Thomas Smith, Debra Torine, Anton Van der Sanden, Jeanne Van der Sanden, Marjorie Whaley Philip Walzak - Jamie Alderks, Julie Archibald, John and Nadine Baldetti, Robert and Betty Clark, Jim and Angela Deitch, Marilyn Handler, Keith McCoy, Leah and Deanna McGrath, Herbert Olujic,The Florida Highway Patrol Auxiliary Foundation, Inc., Cindy Walzak, Jennifer and Tom Weisz, Jennifer Williams John Warner - Eric and Barbara Batty, Brauer Family Trust, Flora Gray, Audey Heicklen, James and Mary McEntee, Robert and Debra Peters Roger Wilemon - Carol and Kenneth Blackburn, Duggan, Joiner & Company, PA, Linda Fulford, James and Nancy Gaston, Sue and Claude Grubbs, Interface Tax/Management Systems, Inc., Jerry’s Pawn and Gun Shop, Inc., Marion and Danny Metcalf, Miller’s Boating Center, Inc., Ocala Insurance, Inc., Smokey’s Pump Service & Well Drilling, Inc., Southern Blade & Supply, Emma Wilemon, Willine and Jesse Ray Yarbrough Bruce Wilkinson - Elia Wilkinson Karen Wilson - Brenda and Richard Mizanin Shirlee Wiseman - Robert and Jean Fortier, Darrell and Joan Jarvis, Peggy Scheidker Susan Woodka - Denis Woodka Richard Zumwalde - Robert Zumwalde

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RIDE TO DEFEAT ALS & WALK TO DEFEAT ALS GIFTS Ride and Walk gifts of $250 or more made between 1/1/12-6/30/12. 230 Fifth A. & J. Mobility Inc. dba Mobility Express Marci Abbrecht Ability Medical Supply, Inc. Action Bolt and Tool Co. Dr. Harold Adelman Anthony Agin Edward Agin Kevin Ahrens AIG Matching Grants Program Alabama Deli Provisions Inc. Albritton Insurance Services LLC Jeanette Alexander All American Air Charitable Foundation All American Air Conditioning & Heating Laura Allen-Tummon Dr. Philip Altus Alberto Amarante Michael Amburgy American Postal Workers Union Ameriprise Financial Advisor Gift Matching Program AMI Mobility Andy Frain Services Peter Antonacci Becky Armbruster Atrium Wallcoverings, Inc. Joseph Atterbury Carolyn Auger Matt Auker Linda Aversa Axis Global Systems, LLC B.A. Roberts, Inc. B.P.O.E. St Pete 1224, Inc. Steven Baade Phillip Babbitt Theodore Babbitt Paul Baertsch Herbert Bailey Kai Bailey Sylvia Bailey Bailey Chestnut Partners Thomas Baker Harry Bakker Bank of America Matching Gifts Baptist Health South Florida Colleen Barlo James Barnes Mary Barnes Barnes Drug Stores Richard Barone Kevin Barry Stanley Barry Sean Barth David Bartkowski Dave Bauer William Becker Tara Bedi Jennifer Beerli Jack Beldon Donna Bergquist Michael Bergquist Dr. Roger Bertholf David Beshears Michael Birnbaum Bishop Moore High School

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Jennifer Blackburn Blessed Trinity Catholic Church Juanita Blumberg Boar’s Head Provisions Zak Boca Tonnie Bognar Bolles School Bono’s At JTB, Inc. Paul Boulay Ashraf Boutros Kevin Boylan, MD Julie Bracken Brian Brege Janet Breman Breuer Investment Consultants Inc. Robert Briggs Bright House Catherine Brinton Amanda Brown Ashley Brown Bradley Brown Dennis Bruce Brumos Motor Cars, Inc. John Buckles Chad Buckmaster Kayla Burgoldt Sheril Burkhart David Burns Laurie Burns Michelle Burrell Bush & Augspurger, P.A. Clayton Butler Jody Byers C & C Insurance, Inc. CA Technologies Matching Gifts Program Brett Caldwell California Pizza Kitchen, Inc. Linda Camp Alonzo Campillo Carl Cannova Capstone Consulting, Inc. Dr. Damian Caraballo Markella Carney Sandra Carson Gail Castellano J. Cavanaugh Natasha Chahal Dianne Chalmers Gregory Chapman, DO Sharon Chapman Suzanne Chartier Chevron Humankind Matching Gift Program Michael Church CNA Foundation Coach Matching Gift Program Kevin Coates Denise Coll Ronald Collier Ray Colombo The John and Ultima Morgan Foundation Donor Advised Fund given through the Community Foundation of Central Florida, Inc. Joseph Conner Continental Freight Forwarding, Inc. Jack Cook N. Perry Cook

Copytronics Information Systems Ron Corbett Corrosion Control, Inc. Costco Wholesale Harry Cotros Leonard Cottrell Tom Coughlin Erwin Coyner CPF Investment Group, LLC Craftworks Foundation Juliana Crawford Sherri Crichton William Cromie David Crow Patricia Crytser Thomas Crytser Betty Cummings Tim Cummings Collette Cunningham Peter Cupps Ronald Curley Jeff Curry Jennifer Curts Daniel Cushman Donald Cutchins D & D Garage Doors Steven Daiagi John D’Amico Robert Daniel Data Targeting, Inc. David Development Martha De Caussin Edward DeBartolo Cam Deiter Carmen Demos Penny Detscher Kristin Detwiler Ana Diaz Monica Digilio-Lee Mark Dillon Denise DiMare Marielee DiMare Natalie DiMare Paul DiMare Salvator DiMare Thomas DiMare Tony DiMare Dimensional Insight Direct Air Service, Inc. Lynn Domenech Lorna Donatone Dave Dooley Denise Dorobkowski Alise Doudakian Carol Dover Ann Druyan Pauline Dubin Michael DuBow Clifford Dudley Dr. Scott Dugas Durham & Rizzi, P.C. Donald Dwares Eagle Pools, Inc. Joy Eber Economy Garage Doors Inc. Margaret Edmiston Dr. Charles Edwards Shirley Edwards Edyth Bush Charitable Foundation Inc. Cindy Egan William Ellrich Mitch Elmer Wendy Elston Michael Emmons Donna Epps Michael Ernst Christopher Evans Excavation Point, Inc. Elsa Falls Stacey Fanning Amanda Favis Dr. Denise Federer Julie Felts

Joseph Ficarrotta Alan Fickling John and Ramona Weaver given through Fidelity Charitable Gift Fund Susan Filskov, PhD April Finkelstein Katherine Fiore First Choice Credit Union David Fisher James Fitzpatrick FJS Inc. Michael Flannery, MD Laura Fleet David Florance Florida Capital Bank Florida Crystals Corp. Florida Osteopathic Medical Association Florida Swimming Pool Association N. E. Fla. Chapter Arnold Fogelman James Ford Samuel Fortune Elbert Foster Ronald Foster Stephen Foster Adrienne Fournier Dr. Arthur Fournier Dr. Suzanne Fournier Keith Fox Alfred Friedman Sanford Friedman Fritzi and Herbert Owens Family Foundation Brian Fulwider H. Gainey Melvin Gale John Gammichia Dr. Roberto Garcia William Gardner 1st Place Sports given through Gate River Run Dan Geary Diarmuid Geary Tadhg Geary General Labor Staffing Services, Inc. Germantown Realty Investment Group Barbara Gilbert Mike Gilligan Paul Glassburn MaryJane Glover-Dodds Betty Goldenberg Bruce Goldenberg Lex Goldenberg Elina Golovko Francine Gonopolsky Dr. Michael Gordon Laura Gorgus Gosport United Methodist Church Rhonda Grable Amy Gracely Alex Graham Cheree and Hampton Graham Diane Graham Lee Graham Karen Gray Leslie Gray Mark Gray GrayRobinson Gray’s Auction Service Mary Lisa Gredler Barbara Green Jennifer Green Harold Greenberg Michael Greenberg Sharon Greenberg John Greenleaf Mandy Gregg Dr. Karen Gross

Jeffrey Grossman Normand Guindon John Gunlogson Julius Guttman Scott Habermehl Mike Hagan Steven Hagibes Jeff Hamrick Kim A. Hanna Hardee Petroleum Company, LLC Hargreen Enterprises, LLLP Tim Harley Betty Harling Lynn Harris Sandra Harris Harris Rebar Susan Hart Mishele Hart Lambert Alan Hasty O. Hawkins Hillary Hayes Jamie Hayes Fred Hazouri Hilde Heard Heartland Real Estate Corporation Tiffany Hecht Liselotte Heiligenstein Billy Heller Nancy Hennessey James Henning Pat Henninger Catherine Henry Steve Herman Patrik Herweck Charles and Phyllis Heywood Clyde Hicks Christopher Hines William Hoatson Steve Hochman David Hodges Dr. Zach Hodgins Homes of Wauchula, Inc. Raymond Hopkins James Hopwood Dr. Elizabeth Hosick Chris Howlett Bernadette Hudak Kerri Hudgins Johnny Hughes Greta Hummer Peter Hurley Ana Husk Teresa Hutchings James Hutchins Michael Ide Matthew Imfeld In Touch Logistics Services, Inc. Teresa Ingram Irish 31 Iron Order MC TBC Stephen Irwin Perry Isenberg James Jacobs Robert Jennings Jerry’s Cash Advance Jet Harbor Inc. Jim See Realty, Inc. Nicole Jimenez Joe L. Davis, Inc. Barbara Johnson Michelle Johnson Francis Johnston Alecia Jones Thomas Jones Jane Jones-Norris Bonnie Jordan Robert Joyce JP Morgan Chase Matching Gift and Volunteer Prog. Ann Jurmain


Just Management Corp. Robert Kaplan Kieffer Karim Catherine Kayser Hollis Keene Thomas Kelsey KEVCO Builders, Inc. Key Buick-Hyundai Jeremy Kiel Carl Kilhoffer Julie Kime Laura King Sam King Donna Kinlin Meryl Kirschenberg Kiwanis Club of Wauchula, Inc. Aviva Klein Stan Knott Tim Konig Kraft Foods Foundation Matching Gifts Program Andre Krasemann Gary Krieger Leonard Kulick Bruce Kumnick Todd Kumnick Thomas Kurinsky Thomas Kurz Lakewood Presbyterian Church Michael Lam Steven Laman Chris Lambert Nancy Lambert Arthur LaMontagne Fern Lampert Mark Landreth Law Office of Daniel A. Mowrey, LLC Melvin Lazar Barbara Lee Dr. Peter Lemieux Kristina Lenz Dr. Theodore Lerner Beth Lewis Renee Lewis Lewy Family Foundation Evelynn Livingston Lockey, Fox, Ledford & Glaum, MDs, PA Lucinda Lonergan William Lowman Lyndan, Inc. Leonidas Macedo Harvey Mackler Susan Madera Paul Maechtle MagicBuz Inc. Jerry Mahoney Andrew Malcolm Phoebe Manders Patrick Maney John Manis Lynn Manly Syeed Mansur Maria Margenot Carol Margolis Marino Performance Oddrun Marrone Josh Martino Orion Marx Massey Services Ronald Mattino Stephen Mattman Max and Ruth Oltarsh Foundation Inc. Wayne May Mayo Clinic Jacksonville Elise McCabe Karen McClaflin Frank McClendon Barbara McClure Lauren McCrystal

Kathy McDiarmid Demitrius McHugh McMaster Family Foundation Vickie McPherson Elizabeth McRae Marcia Mederos Adam Meinrod Dr. Elizabeth Melzer Mercedes-Benz of Gainesville William and Linda Young given through Merrill Lynch Dr. Carolyn Merry Andrew Messina Edward Meyers Lisa Midgett Harriett Miller Leslie Miller Mark Miller Matt Miller Mike Miller Robert Miller Dr. Todd Miller Wanda Miller John Mingus Surachita Mishra Krystal Mitchell Mobility Express Allen Moczul Anand Mohabir Christina Monette Vera Monica Azilee Monroe Mary Mooney Liz Moore Wanda Moran Antonio Moreno Clausen Morrell Thomas Morris Morris & Reynolds Insurance Marianne Morrissette Daniel Moser William Motley Larry Mott Andrew Mueller Nancy Mueller Rosalyn Mullaney Kevin Muller Ralph Muller Alan Mulvey James Murphy Jr. Edward Murray Lee Ann Murray Roderick Murray Sherry Murray Karen Muscavage MYCOR Holdings LLC Vincente Narvaez Rick Nassau National Wallcovering David Nelson Kurt Nelson Samuel Nelson Warren Nelson Jerald Newberry Newman Family Foundation, Inc. Joan Newton Barbara Nicklaus Dr. Nina Njus North Central Florida Area Local APWU Naomi Novotny NPC International, Inc. Jennifer O’Brien Thomas O’Brien Ocean Conversions & Mobility, Inc. Joy Ochoa Kieran O’Connor Arthur O’Donnell Michael O’Donnell

Terry O’Donnell Joan Oklevitch Kelly Olitsky Jim O’Malley John O’Neil Harry Orenstein Joseph Osborne OSI Restaurant Partners, LLC Patricia Otten Scott Owens Tony Pack Sharon Pamplin Adrian Paolini Jacqueline Pappas American Postal Workers Union of Florida given through Jeffrey Pearlman American Postal Workers Union Tallahassee Local 1519 given through Jeffrey Pearlman Dick Peddicord O.J. Perryman Wendi Peterson Dr. Paula Pettavino Robert Picard Andrew Pines Pink Sneakers Productions, Inc. Sandra Plante Martha Plesher Wray Plogher Jason Plourde Emory Potter David Price Todd Pritchard Protano and Sons, Inc. James Purcell Amy Rawls Derrick Reeby Barbara Reed Margaret and Norman Reed Sonny Reed Michael Regan Rekcut Photographic, Inc. James Schauweker Memorial Fund given through the Renaissance Charitable Foundation Inc. RespiCare of Central Florida Respicare of South Florida Robert Reynolds Charles Ribakoff Lacie Rice Donna Richards Linda Richelew Ride-Away Loren Ridinger Roadie Life James Roberts Riley Roca-Kuri Rock by the Sea, Inc. Aida Rodriguez Lisa Roman Alyssa Romano Dr. Frederick Romano Alan Rosenberg Ross A. Hendry, DVM Gregory Rothfeldt Tod Roy Rosalind Roystone James Rudolph, PA Marlene Rusch Ryder System Charitable Foundation, Inc. MaryLou Saks Lanie Salebra Steven Salino Dennis Salmon Sam Pack’s Five Star Ford Vijay Sampath Betty J. Sanders

Diane Sanders Robert Sapp Gail Schaumann David Schawk Paul Scott Karen Seder Daryl Shackelford Tapan Shah Michael Sheflin Jeffrey Sheridan Paula Shields Virginia Shields Silver Lake Resort LTD Donna Simmons Samuel Singh Vijai Singh Skanska USA Building John Skelly Louis Skinner S.F. Slaughter Tim Sleeth Ann Smedberg Allan Smith David Smith Jill Smith Dylan Snyder John Solari Kenneth Soler Stephanie Soler Edwin Solomon Somatic Synergy, Inc. SOS Global Express, Inc. Southeast Industrial Sales & Service, Inc. Kenneth Spitler SSS Investments of Jacksonville St. Johns County Sheriff’s Office, Four Star Assoc St. Margaret Mary Church Mary Stack Shirley Stallings Michael Stambaugh Randy Stanton Star Farms Corp. Rob Steers Martin Stein Samuel Stephens Sarah Stephens Lauren Sterlacci Joshua Stevenson Ben Stiller and Christine Taylor Stiller Sidney Stubbs James Styring Suburban Automotive Consultants Dr. Daniel Sullivan Helen Sullivan Kevin Sullivan Dr. William Sullivan Jeanne-Mey Sun SunTrust Bank - Jacksonville Roberta Swan Barry Switzer Sysco Corporation Troy Tarbox Mark Tarter TelecomPioneers Florida Chapter #39 The Charles Evans Foundation The Geo Group Foundation, Inc. The J.M. Rubin Foundation The Murray and Nadine Rubin Charitable Foundation The Parts House The Regency Group, Inc. The Stellar Foundation, Inc. The Winston Family Foundation

Deborah Thomson Shasanka Thumu Thun Family Foundation, Inc. Thylan Associates, Inc. Shannon Toledo Audrey Tormey Sandra Torres Dimitri Toumazos Toys “R” Us Matching Gifts Trans-Global Products, Inc. Vera Trayner Deborah Trent Trinity Fellowship Inc. Triple S Mobility, Inc. Rocelia Trombley William Turner United Seating & Mobility Mark Bailey given through the United Way of St. John’s County, Inc. Valentine Capital Asset Management, Inc. Sigrid Van Eck Denise Van Voorhis Michelle Vance Henry Varnell Debra Vasilopoulos Verizon Foundation Roshnee Verma Ken Verner VITAS Innovative Hospice Vitas Innovative Hospice Care Carol Vonarburg Tuan Vu, MD Janice Vucinich Wabasso Road Dairy, Inc. Michael Waggoner Paul Wagner Dr. Robert Walker Marty Walrath Anne and Graham Warner Dena Warner Patricia Washington Jerry Waters Terry Watkins Wauchula Abstract & Title Co., Inc. Wauchula Lions Club, Inc. James Webb Lynn Weinstein Richard Weisinger Beth Weiss Scott Welty Cassie Whipple Mark Whitley Jacqueline Whitney Kathy Whittington Robert Whorf Bill Widmann Brent Wilder Veralene Wilemon Annette Wiles James Williams Matt Williams Winning the Fight, Inc. Winter Park Health Foundation, Inc. George Winterling Gretchen Wolf Jamie Wolsfelt Alan Woltz John Wright Christy Xynidis Bonnie Zamosky-Roth Michael Zaronias Robert Zumbado

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GENERAL GIFTS Gifts of $250 or more, made between 1/1/12-6/30/12. Donald Allebach Alpha Delta Pi Foundation Joanne Gonseski given through the AT&T Employee Giving Campaign Diane Bruton Estate of Peter Churchill CITGO Petroleum Corporation Citizens Charitable Foundation The David C.G. Kerr Memorial Fund at The Community Foundation of Tampa Bay, Inc.

Community Health Charities of Florida, Inc. Copperhead Charities dba Transitions Championship CSX Corporate Citizenship D’Agostino Foundation Doctors Neurological Services of Ft. Lauderdale, Inc. Linda Ferguson FNBR Glenn Anderson Memorial Golf Tournament Jennifer’s Designer Exchange Macy’s Foundation Steven and Jodee Martin James Murphy, Jr.

Vincente Narvaez National Alliance for Caregiving Warren and Carol Nelson Premier Beverage Company Rissman, Barrett, Hurt, Donahue & McLain, P.A. Safeco Insurance Terry Singer Joan Smith Southern Wine & Spirits of America, Inc. Stella Thayer United Way of Palm Beach County Brian Connolly through The United Way of Rhode Island Jennifer Williams

HONOR GIFTS Gifts made in honor of a friend, loved one, special occasion or event between 1/1/12-6/30/12. In Honor of Sarah Adams Estelle Croft

In Honor of Patricia Masciantni Matt Juvinall given through JustGive

In Honor of Roland Boone Barbara Boone

In Honor of David Maynard Suzanne Hogan

In Honor of Stephanie Bunton Francis Reidy Robert Worthy

In Honor of Paul McGuckin Naomi Berman

In Honor of Dan Ellis A True Story Production, LLC Joni Petersen given through the Arnold Palmer Invitational

In Honor of Julie Mercer James Mercer In Honor of Johnny Mingus Ann Sheets

Christine Ritondaro In Honor of Selig Salkowitz Naomi Berman In Honor of Susan Shallbetter William Shallbetter In Honor of Michael Sukennikoff Allan and Kathryn Evans In Honor of Jared Tafeen Stephen Rudy In Honor of Stacy Tafeen Stephen Rudy

In Honor of Steven Franks Linda Whitmer

In Honor of Pierre Morrissette Bill Rowell

In Honor of Chuck Hummer Vilma Turner

In Honor of Don Morrow Raymond and Vivian Byrne

In Honor of Arthur Hutchins Richard Hutchins

In Honor of Betty Weinstein In Honor of Edward Pollick Naomi Berman Jerry Aceto Leni Battaglia In Honor of David Weinstein Cecelia Butterworth Naomi Berman John Commoroto Beverly Cowhey In Honor of Jillian Weinstein Janet Demarco Naomi Berman John Ferraiuolo Dale Gerring In Honor of Mary Wilson Janice Gundersen Steven Wilson Jo Ann Gurian Kathleen Halpin Camille Introcaso Patricia LaPenta Every attempt has been made to ensure the accuracy Deanna Menold of each gift and each name. If we have made an error, Alvin Powlis please accept our apology and let us know by contacting Judith Proulx Gabby Harrison at gharrison@alsafl.org.

In Honor of Amy James John and Wanda McConnell In Honor of Keith James John and Wanda McConnell In Honor of Maddox Kuhn Ashley Smith In Honor of Dr. William Luke Paul Stanton In Honor of John Masciantoni Matt Juvinall given through JustGive 22

In Honor of Terry Wade Catherine Beckford given through New York Life Giving Campaign


In Memory

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. Descedents from 1/1/12 - 6/30/12.

Richard Anderson Paul Antonini Howard Berntsen Patricia Brennan Jean Briggs Steven Brodsky David Burton Vincent Candela Grace Carr Peter Carr Charles Carter, Jr. John Chavoen Gene Clarke John Collins Dallas Conner Carolyn Corlew William Dell Condit Dow Priscilla Duis Don Edgerly Dan Ellis Martha Elmore Ollie Evans John Flavan Eugene Ford, Sr. Mary Gessells James Glenney John Goforth Janice Goldi Dr. Paul Goyette Raymond Greenlee Nancy Grosz William Gulmy Martha Halling Lois Hartog Doris Henneman Arcangel Hernandez Richard Hoffman

Ron Horcher Floyd Hurst Nathaniel Hynson George Irwin, Jr. Francis Jacobs Anne Johnson Cynthia Keckler Elwood Kleman Marilyn Kupperman Russell Lathrope Susan Lebo Leslie Lederman Bonnie Lindsey Vincent Lovett Julie Lusson Ethyl Martin John Masciantoni William Maybrook David Maynard Mary McDole Colin McLernon Terrence McMullen Barbara Medina Margo Melton Philip Mitten Mark Moore Beryletta Morgan Zoreh Moshir, PhD Tom Muessel Phyllis Mund Ridge Nye Margaret O’Toole Thomas Owens Halsey Perdue Elijah Peterson, Jr. Harold Piper Mary Polanec Kittyann Pozo

Albert Pruett Robert Ray Geraldine Richmond Rhodena Robinson Ronald Robitaille Sheila Rubin James Santella Johnnie Severance Judith Shaller Carole Siewert Danice Smith Andrew Struhar Wayne Synstad Helmut Van der Sanden Karen Van Giesen Clark Vaughn Rita Vouros Elijah Waldron Philip Walzak Ray Ward Josephina Watts Ruby Williamson Shirlee Wiseman James Wolff Marilyn Wyles Carol Yennaco Connie Zevely

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Legacy Society

The Legacy Society recognizes and honors people who have advised us of their plans to leave a future planned gift to The ALS Association Florida Chapter. Such gifts might include a bequest, appreciated securities, gifts of real estate, gifts of life insurance and/or charitable income gifts, such as charitable gift annuities, charitable remainder unitrusts, charitable remainder annuity trusts. For more information, contact Kim Hanna at 888-257-1717, ext. 105. Peter S. Churchill u Leon Ganung u Anonymous u Kim A. Hanna u Sherry L. Murray Richard Nimphie u Francis F. Oppedisano u Jacqueline A. Oppedisano u Becky Rizzuto James M. Robertson u Ruth Shively u Thomas D. Stevens, Jr. u Eleanor Weidemeyer John H. Weidemeyer Italicized names reflect members who are deceased.

Charitable Gift Annuities Are A Golden Opportunity! With interest rates on investments low and markets volatile, the current payment rates on Charitable Gift Annuities really do represent a golden opportunity for you and for The ALS Association Florida Chapter. You benefit today and help make a difference in the lives of ALS patients and their families in the future. You make a gift to The Association and in return, we agree to make payments to you for life - at attractive payment rates. To receive a free personal illustration showing your payments and tax savings based on your exact age and gift amount, contact our chapter. Contact: Kim Hanna Tel: 813-637-9000 ext 105 | 888-257-1717 | khanna@alsafl.org The ALS Association Florida Chapter | 3242 Parkside Center Circle | Tampa, Florida 33619 | www.alsafl.org

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Join the National Amyotrophic Lateral Sclerosis (ALS) Registry The National ALS Registry will help give a better picture of who gets ALS and risk factors for the disease. It will also help researchers get better information on the number of people with ALS. You can join if you have ALS and are a citizen or legal resident of the U.S. It only takes about 5 minutes. While you will receive no direct benefits from joining, visit the Registry Web page for useful information on clinical trials and clinics. Join the National ALS Registry at www.cdc.gov/als or call (770) 488-0027 for more information.

Lou GehrigTM licensed by the Rip Van Winkle Foundation: www.LouGehrig.com

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GO TO: WWW.CDC.GOV/ALS TO JOIN THE NATIONAL ALS REGISTRY!


Florida’s

Premiere Mob

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 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 through 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 may be. We can even help you with driving aids. We carry a wide selection of new and pre-owned mobility vehicles and equipment available for immediate delivery. 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!

Call and ask about our affordable pricing and financing options!

AUTO MOBILITY SALES LAKE WORTH, POMPANO, MIAMI & THE GOLD COAST

1-877-292-0054

Served in the Military recent updates in

www.automobilitysales.com

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www.automobilitysales.com


bility Equipment Dealers Joey

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 TAS 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. Wheelchair Accessible

Minivans

For larger individuals or larger wheelchairs the full-sized van offers the best mobility solution. Easily transports family members and additional medical equipment with ease.

Full-sized

Over the years, wheelchair accessible minivans have become the popular choice in the vehicle modification industry because of their drivability, appearance and overall appeal. .

y? Ask us about n VA benefits

RIDE-AWAY HANDICAP EQUIPMENT

TAMPA BAY, THE TREASURE COAST, THE GULF COAST & CENTRAL FLORIDA

888-RIDE-AWAY

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The ALS Association Florida Chapter

NONPROFIT ORG US POSTAGE

PAID

The ALS Association Florida Chapter, Inc. 3242 Parkside Center Circle Tampa, FL 33619-0907

Register Today for the 2012 Ride to Defeat ALS! www.ridetodefeatals.org November 3, 2012 Largo, FL

TAMPA FL Permit No 2910

Support Groups Join us at an upcoming resource 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 Charlotte Daytona-Ormond Beach Fort Myers Gainesville Highlands Jacksonville The Villages Manatee-Sarasota

Melbourne Naples Ocala Orlando Pensacola Tallahassee Tampa Treasure Coast/Stuart Weston Vero Beach

Visit www.ALSAFL.org or call us at 888-2571717 for support group dates and directions.

Follow us on the web:

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DESIGN BY ALISSA GUTIERREZ


ALS Access Newsmagazine Summer 2012