Spring 2013 ALS Access Newsmagazine by The ALS Association Florida Chapter

THE N E WS M AG A ZI NE O F T H E A LS A SSO C IATIO N FLO R ID A C H A PTER

ALS A C C E S S

Lending a Helping Hand Statewide ALS loaner closet bridges the gap

ALS Association Funded Research at The University of Miami A Husband’s Tribute in his Wife’s Memory Ride to Defeat ALS Highlights

SPRING 2013

STAFF Kim Hanna President and CEO khanna@alsafl.org - ext. 105 CARE SERVICES Christine Bright, MSW Care Services Director cbright@alsafl.org - ext. 130 Annie Blackburn Care Services Admin. Asst. ablackburn@alsafl.org - ext. 113 Heran Sisay, MA Care Coordinator, Greater Tampa Bay hsisay@alsafl.org - ext. 103 Aimee Freedman, BSW Care Coordinator, North Central FL afreedman@alsafl.org - ext. 117 Judie Benwick, MSH, MPH, CHES Care Coordinator, North Florida jbenwick@alsafl.org - ext. 112 Rhonda Rittenhouse, MA, LMFT Care Coordinator, Central East FL rrittenhouse@alsafl.org - ext. 109 Patricia Stanco, MHS Care Coordinator, South West FL pstanco@alsafl.org - ext. 110 Jessica Bianchi, MBA Care Coordinator, South East FL jbianchi@alsafl.org - ext. 122 Katie Mitchell, MSW Care Coordinator, West Central FL kmitchell@alsafl.org - ext. 116 Pricilla Puente Spanish Speaking CS Associate ppuente@alsafl.org - ext. 106 FUND DEVELOPMENT Todd Tippin Ride to Defeat ALS Manager ttippin@alsafl.org - ext. 125 Lizzie Danner Walk Manager Jacksonville, Tallahassee ldanner@alsafl.org - ext. 115 Diana Perrault Walk Manager Orlando, Tampa dperrault@alsafl.org - ext. 111

April Tomberlin Event Associate atomberlin@alsafl.org - ext. 118

PRESIDENT’S MESSAGE

Emily Pembroke Walk Assistant, Sarasota Walk epembroke@alsafl.org - ext. 127 AWARENESS Alissa Gutierrez Marketing & Communications Director agutierrez@alsafl.org - ext. 120 Patti Palmer Awareness Manager ppalmer@alsafl.org - ext. 131 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

Dear Friends, ALS is a devastating disease on all fronts - physically, emotionally, socially, and financially. If ALS has not touched you personally, it’s hard to imagine just how horrific this disease can be. Imagine if you were left completely immobile and unable to stand or walk. A power wheelchair could offer freedom and quality of life, but your insurance is inadequate and you just cannot afford the cost. Imagine now that you have a wheelchair, but the doorways in your home are not wide enough to accommodate you, and you don’t have the funds to make the necessary changes. Or now imagine that your spouse, who is your full-time caregiver, is exhausted and needs a brief respite every week to run errands, take a nap or visit with friends. But this type of care is very expensive, and you simply do not have the money.

BOARD OF TRUSTEES Hiram Green Chairman Tim Cummings Vice Chairman Warren Nelson Treasurer James B. Murphy, Jr. Secretary Wendy Bitner John Cannistra Kevin Conn Erin L. Malone, Esq. Bob Miller Dewayne Standifer Dr. Sandra L. Torres Kim Hanna President and CEO David Smith Honorary Board Chair

Tiffany Geiger Walk Manager South Florida, Palm Beaches tgeiger@alsafl.org - ext. 126

All of these scenarios are things that people with ALS deal with every day. With no or little insurance, this incredibly costly disease devastates the pocketbook as quickly as it does the body. Some estimates report that it costs close to $200,000 to care for a person with ALS – a princely sum not many families can afford. The ALS Association Florida Chapter is determined to help patients and their families by awarding monetary grants through our CARE Assist Grant Program and by loaning patients much needed durable medical equipment. We recently helped a family with home repairs to their back door and lock. The wood around the door was rotting and the lock no longer held it secure. The repairs helped the patient feel less vulnerable- especially since the family had been threatened with a break-in by the neighborhood teenagers who knew that the hospice worker had morphine in the house. The $757 needed to make this repair might not seem significant to you, but it means all the world to the family who now feels safe and sound under their own roof. You can help a family just like this one. No gift is too small. In fact, a gift as little as $250 can purchase needed equipment that is not covered by Medicare, or modify a bathroom with safety devices, or provide funds to help build a ramp for a homebound pALS. Won’t you please lend a hand and make a gift today? With Gratitude,

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

Kim Hanna President and CEO

Maureen’s Loving Legacy Making Life Easier for People With ALS

s most people struggling with ALS know, the disease is extraordinarily costly. And for some individuals who are not fortunate enough to have private insurance, the financial demands of Lou Gehrig’s Disease rob them of dignity, peace of mind and often times, the basic comforts of life.

ALS research, she knew all too well the financial drain the disease placed on a family.

The ALS Association Florida Chapter has established CARE assist grants to assist with medical equipment not covered by insurance, home and van modifications, transportation to Florida Chapter ALS clinics and respite or home care.

Maureen Miller passed away on July 1, 2009. Shortly thereafter, Bob created the Maureen Slattery Miller Funds in her memory, one in Florida and one in Maryland. People with ALS who have a financial need can apply for a grant to provide home modifications, durable medical equipment and address other dire situations.

In 2008, Maureen Miller received the dreaded diagnosis that she had ALS. A little more than a year later, at age 61, she passed away. “Maureen, I called her Mo, was a softspoken, lovely person,” her husband, Bob, said. “I told her many times, if someone doesn’t like you, it’s their fault.” Quick to smile and laugh, Bob says, she retained her good nature and even temper to the end. Bob and Maureen divided their time between homes in Maryland and Florida. Bob was Maureen’s primary caregiver and they spent a lot of time during her last several months talking about how fortunate she felt to have been given such wonderful care and the extraordinary expenses incurred with ALS. Maureen stressed that she would like to help people financially devastated by ALS. Bob says that although Maureen appreciated the importance of furthering

“Maureen wanted to help people in the here and now,” Bob says. “She wanted to make their lives just a little bit easier if she could.”

“Thanks to Maureen’s legacy, financially challenged patients are given a little peace of mind,” Kim Hanna said. “The

Bob and Maureen Miller

grants make a huge difference in their daily quality of life.” The fund has provided back up batteries for power wheelchairs, paid for bathroom modifications so that a shower can accommodate a wheelchair, repaired a leaking roof, installed ramps, enlarged doorways, and in one case, replaced a rotting back door that compromised a patient’s safety. The ALS Association Florida Chapter President and CEO Kim Hanna knows only too well how much of a difference the fund has made in the lives of Florida patients.

lenged patients are given a little peace of mind,” she said. “The grants make a huge difference in their daily quality of life.” The stories of people helped by the Miller fund are numerous and poignant, covering essential expenses some patients simply cannot afford. According to Care Services Director Christine Bright, “We are able to fund grants because of Maureen’s legacy. It’s a true gift to our families struggling with the financial devastation of this disease.” To find out how you can help with our CARE Assist Grant program, contact Kim Hanna at 1-888-257-1717, ext. 105.

“Thanks to Maureen’s legacy, financially chalThis ramp was built for an ALS couple in Jacksonville with the help of a CARE assist grant.

Honoring Loved Ones Through Action Four Individuals Who Lost Spouses to ALS Volunteer for Research Study BY ALISSA GUTIERREZ

osing a spouse to a devastating disease is a traumatic

greater risk of death

event. When that disease is ALS, many husbands and

during a twelve-month

wives (most of whom were primary caregivers), exhausted

period.

from their excruciating journey with Lou Gehrig’s Disease, have conflicting emotions. Understandably, some just need

“This finding is very

to get away from ALS for a while to try to make sense of the

exciting for the ALS

competing memories of their partner’s death and the life

community,” com-

shared before ALS.

mented Lucie Bruijn, Ph.D., Chief Scientist

A group of Jacksonville cALS (Caregivers of ALS) who are

for The ALS Association.

part of The Florida Chapter’s surviving spouse’s social

“Although a biomarker is only proven once tested in a clini-

renewal group called Next Chapter, are continuing to honor

cal trial and shown to be more predictive than the currently

the memories of their loved ones by participating in an

available measure of progression in ALS, this protein appears

important research study.

to be a very promising biomarker of disease progression in a relatively large group of patients and should allow us to

According to a study published online on October 31, 2012

conduct shorter clinical trials and speed the search for new

in the Journal of Neurology, Neurosurgery and Psychiatry,

therapies.” A biomarker is a substance or characteristic that

a certain protein in the blood may serve as a biomarker,

changes with the disease state. Blood cholesterol level is a

providing ALS researchers a way to track the progress of

biomarker for heart disease risk, for example.

the disease and potentially to determine quickly whether a patient is responding to therapy. The study was supported

In the study, researchers at the Mayo Clinic in Jacksonville,

by the EMD/ALS Biomarker Research Fund and is one of 80

Florida, and Emory University in Atlanta, Georgia, measured

active projects in The ALS Association’s Translational

the concentration of pNF-H in the blood and in the cerebrospinal fluid (CSF) of ALS patients throughout the course of a year. They found that those patients who began with higher levels of the protein in either blood or CSF tended to progress faster than those with lower levels. In addition, those with higher levels were at greater risk for dying during the course of the study than those with lower levels. Tim Cummings, who lost his wife Bobbie in 2005, is one of the Next Chapter members participating in the study. “Even after her diagnosis, Bobbie never focused on her own health,” Tim said. “She was always concerned with doing for others. When we heard about this study at Mayo Jacksonville, she wanted to get involved.” Tim said it was important to his wife that he stay involved in the fight to find a cure for ALS after she passed away in

Bobbie and Tim Cummings

2008. He and Bobbie volunteered for the multi-staged study in 2007 – Bobbie as an ALS patient and Tim as a healthy

Research Advancing Therapies (TREAT ALS™) portfolio.

control.

This new study showed that elevated blood levels of a

Other members of Next Chapter who are involved in the

protein called phosphorylated neurofilament heavy subunit

study include Sherry Murray, who lost her husband to ALS

(pNF-H) correlated with more rapid decline in patients with

and co-founded the group with Lily Wimpee and Laurie Bal-

ALS. Higher levels of pNF-H were also associated with a

lowe, Dick Bell, who lost his wife in 2011 and Roy McLaugh-

lin, who lost his wife in 2008. According to Roy McLaughlin, “It was a very slow four and half years watching my late wife deteriorate daily. Anything I can do to help find a cause, treatment, and better yet a cure for ALS, I surely will do. Participating in this study is a small price if it can achieve the above results.” Dick Bell echoes the same thoughts. “The reason I volunteered for the Neurofilament study at Mayo Clinic is very simple, I wanted to find a way help the people that are suffering with ALS,” he said. “My wife Frances was diagnosed with

Jacksonville Next Chapter Christmas Party

ALS in May of 2011 and passed away in September 2011 -- a very short time – but in those few

nothing like I thought it would be. I didn’t feel a thing.”

months she went from being a very active person (swimming, scuba diving, tennis, travelling and golfing), to a

Through their participation in research, an often fulfilling and

person who had no control over her own body. While in

self-empowering experience, ALS patients and their families

treatment at Mayo, she volunteered to be a in a drug study

hold the key to scientific advancement. This-together with

and she also donated her brain and spinal cord for research

the recognition that palpable progress in ALS research is be-

at Mayo Clinic.”

ing made, even if the translation into effective therapy is an arduous process-is cause for optimism and hope.

Sherry Murray encourages people to get involved with ALS research any way they can. “What they asked of me was so simple – I underwent a spinal tap, which was painless and

For more information about volunteering for an ALS research project, go to: http://www.alsconsortium.org/search.php

MOVING FORWARD

Next Chapter Social Renewal Groups Provide Support and Camaraderie

The ALS Association Florida Chapter Next Chapter is a social renewal group for spouses who have lost a loved one to ALS. Next Chapter networks provide a social outlet and connections to help spouses through the transition from caregiver/partner to individual. The first Next Chapter group began in Jacksonville in 2010 and groups are now being formed in the Tampa Bay area, Sarasota/Charlotte/Manatee and the Central Florida/Orlando/Brevard County areas. The groups serve three purposes: 1. 2. 3.

Social renewal for widows and widowers. Social support connections at ladies’ and men’s luncheons for current ALS spouses. Volunteer opportunities through partnerships with The ALS Association Florida Chapter and partner organizations to provide specific services to patients and families.

For more information about a Next Chapter group in your area, call 888-257-1717, ext. 113.

2012 Ride to Defeat ALS

THANK YOU! The 2012 Ride to Defeat ALS raised $184,000 in its fourth year. This would not be possible without our wonderful participants, volunteers and sponsors. TOP TEAMS

1. Ride Operations Team ($13,315) 2. Bike for Mike ($11,687) 3. All ways Hope ($9,649)

4. Larry’s Crew of Misfits ($8,800) 5.Team D.A.D. (Defeating ALS for Dad) ($8,200) 6. Team Charles Mattern ($7,740) 7. Team UnitedHealthcare ($7,101) 8. High Rock Lake Warriors ($6,963) 9. Miles for Michael ($6,750) 10. Hal’s Pals ($6,705)

TOP RIDERS

1. Gary Dassatti ($9,135) 2. Michael Weaver ($6,240) 3. Melanie Steele ($6,200)

4. Thomas Sabo ($6,110) 5. Michael Flannery ($5,000) 6. Mike Miller ($3,597) 7. Robert Beall ($3,281) 8. Roger Buzatu ($2,865) 9. Rosie Buzatu ($2,853) 10. David Harbaugh ($2,825)

WALK

the Extra Mile

This spring, more than 5,000 people across the State of Florida stepped up to the starting line at the Walk to Defeat ALS® and put two feet forward for a cause they care about. The mood was festive. Walk teams wore colorful t-shirts as they moved to the beat of music and made their treks. Many who walked had a loved one who is still fighting the deadly disease. Others walked in memory of a loved one who has lost the battle. Many people, without any personal connection, still walked out of simple concern for those who are suffering from Lou Gehrig’s Disease. For many teams, Walk day was the celebration at the end of a longer race – the culmination of many months of fundraising and battling it out to be the top team. When every family team and corporation adds their efforts together, we’re hoping the 2013 Walk to Defeat ALS® events will raise $1.35 million. This year we need your help more than ever. Our statewide Walks are down by $300,000. We can’t close the gap without your support. The Walk raises critical funds for patient programs like support groups; loaned medical equipment; ALS clinic support; respite care; grants to patients for home modifications, transportation, and other needed services; advocacy; awareness and many other vital services. We’re asking you to send more emails, ask more friends, throw another event, make another donation – whatever it takes to make us hit the $1.35 million mark. Achieving this goal is so important as we strive to continue serving patients and families and funding research to find a cure. Visit www.WalktoDefeatALS.org to take action and “Walk the Extra Mile” with us. By doing so, you will help us take another giant leap in our quest for a cure. 7

At The FOREFRONT of ALS Research

University of Miami Team is Pioneering New Studies BY ALISSA GUTIERREZ

he University of Miami is currently conducting an important research study for family members of patients with familial ALS; these pre-symptomatic individuals are at risk for developing ALS because they carry a mutation in ALS susceptibility genes, such as C9ORF72 ,SOD1, TARDBP and FUS/ TLS, which are known to cause ALS. Two independent studies, both funded by The ALS Association, discovered these genetic abnormalities that, according to researchers, are the most common cause of amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). The UM study, called Pre-fALS, for Pre-symptomatic familial ALS, is led by Michael Benatar, MD, PhD, Associate Professor of Neurology, Chief of the Neuromuscular Division, and the Walter Bradley Chair in ALS Research at the Miller School of Medicine. The most common form of ALS in the United States is “sporadic” ALS. It may affect anyone, anywhere. “Familial” ALS (fALS) means the disease runs in families. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. Dr. Benatar explained that they are working on the premise that neurodegenerative diseases in general begin well in advance of clinical symptoms and diagnosis. “With fALS, we can usually identify the genetic cause of disease in the family and identify people in the family who carry the gene but have not yet developed symptoms of ALS,” Dr. Benatar said. “We want to determine how far in advance of these symptoms we can find evidence of the disease.”

The study was originally begun in 2007, but looking only at the SOD1 gene. Now the study has been expanded to include all known ALS susceptibility genes. Dr. Benatar says there has been continued growth in the participant enrollment since the study began, and currently there are 65 participants who travel to Miami regularly for their annual assessments. Dr. Benatar stressed that Pre-fALS is a long-term study. Participants will be followed from pre-symptomatic to the time when ALS symptoms begin to appear. “The earlier we can intervene, the better chance we will have of possibly preventing ALS from developing,” Dr. Benatar said. He explained that currently, it takes about 10 months for a person to be diagnosed with ALS. And by that time, it may be too late for a potential therapeutic agent to exert its effect. “Our long-term goal for this study is to eventually design a preventive clinical trial,” Dr. Benatar said. “To identify the disease in a Pre-fALS participant and stop it before it appears.” Participants in Pre-fALS are evaluated using novel imaging and electrophysiological biomarker techniques. According to Dr. Benatar, MRI may turn out to be a useful marker for diseases like ALS. Imaging studies for ALS was supported by funding from The ALS Association. Dr. Benatar’s team is also working on an Antisense Project for C9ORF72 Related Diseases. The recent discovery that a repeat expansion in the C9ORF72 gene may cause both ALS and FTD is very significant for a number of reasons. Not only is this genetic mutation the most common cause of both sporadic and familial ALS, but the nature (i.e. repeat expansion) and location (i.e. non-coding region of DNA) of the genetic abnormality strongly suggest that it exerts its effect via an effect on the processing and metabolism of RNA. Moreover, the nature of the genetic abnormality is such that it lends itself to therapeutic intervention using a type of gene therapy known as anti-sense oligonucleotides. In the current study, investigators propose a strategy to (a) refine our understanding of the relationship between the genetic abnormality and the clinical presentation; (b) develop a semi-high-throughput method

for screening potential treatments; and (c) complete an initial screen of a panel of antisense oligonucleotides designed to target the C9ORF72 gene. This study aims to complete the early steps needed to develop gene therapy for a subgroup of patients with ALS and/or FTD. For this study, Dr. Benatar’s team collaborated with Dr. Zane Zeier and Dr. Claes Wahlestedt, the Dean of Therapeutic Innovation at The University of Miami Miller School of Medicine, and an international expert in RNA.

“In the absence of effective treatments for patients with ALS, the opportunity for research participation offers the best hope for patients and their families.” Dr. Michael Benatar In this study, patients will be asked to donate a skin biopsy, which will used for therapeutic discovery. This project will determine if there is potential to develop a clinical trial.

“It’s a bedside discovery into the genetic cause of ALS,” Dr. Benatar said. “From the bench to the bedside and back to clinical trials.” This is the most exciting time in history for ALS research. New genetic discoveries in the last five years have shed light on new links between familial and sporadic ALS, unmasked important connections between ALS and other degenerative disorders, uncovered important disease mechanisms that had previously been overlooked, and paved the way for new therapeutic development targeting these newly discovered pathogenic pathways. Through participation in research, an often fulfilling and selfempowering experience, ALS patients and their families hold the key to scientific advancement. Progress is being made every day in ALS research. Even if the translation into effective therapy is an arduous process, such progress is cause for optimism and hope. Dr. Benatar stresses that in the absence of effective treatments for patients with ALS, the opportunity for research participation offers the best hope for patients and their families.

GETTING INVOLVED In ALS Research Projects Clinical Research in ALS is the only way to turn promising science into treatments for people. Learn more about the role of clinical research in the development of new treatments for people with motor neuron disease and how you can get involved. What is clinical research? Clinical research, also referred to as clinical trials, is research that occurs in human subjects. Almost all clinical research is regulated by the Food & Drug Agency to ensure that research is conducted in both a safe and ethical manner. Why is clinical research so important to finding a cure? People with ALS or motor neuron disease who enroll in a clinical trial are contributing to improved health care for everyone with the disease. Even when the results of a trial are negative, we learn that much more about the disease as well as how to look for more promising new treatments. Today people with ALS have many opportunities to participate in the clinical research, both interventional and observational. There are also many ways that family members, loved-ones, and caregivers can help the effort. Some studies need healthy volunteers to participate. With help from The ALS Association, The NEALS Consortium provides up-to-date information for finding both federally and privately funded clinical studies focusing on ALS and motor neuron diseases. You can locate both interventional trials, which examine if treatments are effective and safe under controlled environments, and observation trials, which examine people in more natural environments. To find a trial, go to: http://www.alsconsortium.org/search.php. To make a donation to fund research, go to www.alsafl.org

PROVIDING

A Helping Hand The Florida Chapter’s statewide loaner closet

or someone with ALS, medical expenses can quickly become devastating. The ALS Association Florida Chapter created our statewide durable medical equipment (DME) loaner closets to ensure that patients can get the things they desperately need to live with Lou Gehrig’s Disease.

costly medical equipment needed to maintain quality of life with this disease. Many do not have adequate insurance coverage,” she said. “Care Services staff have spoken to so many grateful people with ALS whose safety, mobility and independence have been improved with the loaner equipment.”

Currently, we have nine “closets” located throughout the state of Florida. The closets are actually storage spaces within existing DME companies who have partnered with the Florida Chapter to store and maintain our equipment at no cost to us or our patients.

Often times, families from out of town who are vacationing in the Sunshine State will call the Florida Chapter to obtain loaner equipment to use during their stay. Knowing they’ll have the things they need when away from home has been incredibly comforting for many.

The statewide closets contain: l l l l l l l

Power wheelchairs Manual wheelchairs Hospital beds Hoyer lifts Shower equipment (benches, etc.) Ramps Lift Chairs

When a family needs a certain DME item, they simply contact their Care Coordinator and the Florida Chapter sends a request to the loaner closet closest to them. The company then delivers the item to the patient within 5-10 business days. Care Services Director Christine Bright knows firsthand the critical importance of our loaner closets. “We have many people here in Florida who cannot afford to buy the

of ALS, the ability to communicate becomes more and more difficult. Most patients with ALS experience difficulty with speech and movement during the course of their illness. Some patients completely lose their ability to speak and to use their hands. The inability to speak is frustrating and emotionally devastating. Assistive technology

Sue and Dave, a couple from Pennsylvania, sent us a note after their recent vacation to Walt Disney World. “We just got back from our Disney trip and wanted to send a HUGE Thank you for helping us make it all happen. The ALS Association Florida Chapter was fabulous in getting us a loaner wheel chair and shower chair. The wheel chair was a brand new Q6 Edge, which is what Dave has ordered and is awaiting here at home. They worked with Ride Away vans in getting the equipment to the rental agency who met us at the airport with our rental van. Not only did we have a wonderful week seeing the sights and riding the rides (we even got Dave on Tower of Terror!!), but we had a chance to familiarize ourselves with the wheel chair and experience the convenience of a wheel chair van. Dave’s father and stepmother joined us, which was also priceless. We really can’t thank you enough.”

helps a person with ALS remain an active participant in their family and community life, become more independent, and make medical decisions.

In a collaboration between Care Coordinators, Speech Therapists and the Florida Chapter’s AAC/DME Associate, a determination is made as to the best device for a patient’s particular needs. This determination is made based upon physical ability and level of mobilIn addition to DME loaner closets, the ity. The device is then shipped directly Florida Chapter also has Augmentative to the patient from our home office. Alternative Communication Device (AAC) The Florida Chapter also provides closet. training to the patient from the device vendor when necessary. Because of the degenerative nature

SUE AND DAVE AT WALT DISNEY WORLD

Often times, the Florida Chapter’s AAC/DME Associate will problem-solve with patients via phone or email for assistive technology solutions. Being diagnosed with bulbar onset ALS three years ago, Michael Mision is completely paralyzed and able to communicate only with his loaner Eye Gaze device from The Florida Chapter loaner closet. After returning home from his last hospitalization, Mike’s loaner device did not work when his wife, Sandy (his full-time caregiver), tried to set it up. When troubleshooting over the phone did not resolve the problem, Florida Chapter AAC-DME Associate Lindsay Dapp traveled to the Mision’s home to help them get the Eye Gaze working properly again. In a note sent to the Florida Chapter, Sandy Mision said, “Thank you doesn’t seem to say enough. I cannot truly express how grateful Mike and I were for Lindsay’s help. Her superior customer service and positive attitude and professionalism were so appreciated.” Both the DME and Assistive Technology closets are meant for people with ALS who are underinsured or without insurance. We also assist people who are waiting for their own devices to arrive and loan out a piece of equipment in the interim. All of this is done at no cost to the family. Assistive technology is anything that

can help people with ALS live as independently as they can, for as long as they can. Besides expensive items like power wheelchairs and Eye Gaze devices, the Florida Chapter’s AAC/ DME Associate also helps families brainstorm low or no cost solutions for everyday problems presented by the disease. Solutions that can make a huge impact in living with ALS. These can be as simple as a foam grip on a toothbrush, large button remote controls for the television, large button telephones, and offset door hinges that are a simple fix to allow a wheelchair through a doorway. Our loaner closets also provide support equipment to our patients attending Walks and ALS Awareness events across the state.

Bay Area to participate in the five-mile portion of the Ride with his family. Our local DME company delivered a power wheelchair to the event, so the patient could participate. This was done at no charge. Christine Bright says, “We utilize every resource possible to allow patients to remain as independent as possible,” she said. “Our DME partners are a crucial part of making that happen and we are so grateful for their help.”

“We have been able to provide single-day wheelchair loans for pALS who need them at events,” Lindsay Dapp said. “Our DME partners will bring the chairs to the specific event so our patients can participate – we’ve built really great relationships with these companies and they help our patients any way they can.” At the recent Ride to Defeat ALS in Largo last November, a patient from South Florida was traveling to the Tampa

MICHAEL MISION WITH HIS LOANER EYE GAZE DEVICE

DME PROVIDERS IN FLORIDA Ability Medical Supply: 888.572.7603 ext 311

BayCare: 727.394.6558

AMI: 727.535.6100 ext 214

Gulf Coast Rehab: 850.494.0246

Barnes Gainesville: 352.333.2525 ext 553

United Seating: 813.626.8476 ext 3432

Barnes Jacksonville: 904.301.1050 ext 551 Barnes Tallahassee: 850.894.4480 ext 551

To donate an item to our statewide loaner closet, call 888-257-1717, ext. 113.

keeping up with

ALS RESEARCH BY PATTI STANCO

ight as 2013 began, the ALS community was blasted

placebo-controlled, Phase

with disheartening headlines stating that the EMPOW-

III study. While the results

ER trial and the drug dexpramapexole (“dex” for short) was

from the EMPOWER trial

not effective in treating ALS. For a community ever-vigilant

were “negative,” the trial itself

for hope -- the short, concise articles delivered little. But

was “successful.” This is an

those that live with, care for, and love someone with ALS

important distinction because

know from experience that sometimes less than ideal

there are many trials that are not designed well, include too

circumstances can reveal a silver lining.

much “noise” of other factors so scientists cannot draw solid conclusions, or have any number of problems that prevent

The head of the ALS research program at Biogen/Idec,

researchers from answering key questions.

Neurologist Doug Kerr, MD, recently shared an update on the trial at a meeting in Washington, DC. A summary of his

Biogen/Idec has hoped that the drug would show a 20%

comments follow:

- 30% reduction in decline which they anticipated would be reflected in 30 endpoints including the ALS functional

“We have tools and targets and ways to investigate ALS that

rating scale, respiratory status, and survival. The drug was

we never had before.”

shown unequivocally to be ineffective. The researchers looked carefully at the data to ensure they weren’t missing

Dr. Kerr emphatically asserted that Biogen/Idec is in the

something. They looked at demographics, age of onset,

fight for the long haul until a treatment and cure is found.

slow progression vs. faster progression, bulbar onset vs.

The company knew when it decided to take on ALS that it

limb onset, Europe vs. the U.S., and every which way one

was not an endeavor for the faint-of-heart. The scientists

could imagine in order find out if the drug worked at all for

and executives at Biogen/

any subset of ALS patients. The attempt was unsuccess-

Idec remain committed to

ful. However, several important advances came out of the

ALS.

EMPOWER trial that will have a long-lasting, positive impact on future research efforts.

This is good news for the ALS community to have

1) RECRUITMENT: The trial successfully recruited almost

a strong pharmaceutical/

1000 patients in five months. This is a remarkable achieve-

biotechnology company as a

ment. Many trials that size might be expected to take up

partner in research that will

to two years to recruit that number of patients in multiple

build on its experience for

countries. The company did its part by logistically getting all

future clinical trials.

of the sites ready to be up and running at the same time and the ALS community did its part by responding quickly. Other

The results of the EMPOWER

companies considering ALS research will be impressed and

trial (which will be formally

motivated by this noteworthy accomplishment. There are a

released at the AAN confer-

surprising number of clinical trials in other fields that never

ence in March) illustrate the

begin because there are not enough patients willing to partic-

drug development process

ipate. This is demonstratively not the case in ALS.

and why compounds are

tested in 3 phases. Dex was

2) POWERFUL JOINT RANK ENDPOINT: Historically ALS clinical

tested in Phase II to look

trials measure either survival or function. The EMPOWER

at safety and efficacy and

trial researchers developed an endpoint that measured both

the results were found to be “intriguing.” To determine if

because particularly with ALS both are equally important.

the drug would be truly safe and effective required a large,

The endpoint is accepted by FDA and all of the relevant

European Union regulatory bodies. The availability and wide acceptance of this endpoint makes research attractive for other companies to work on ALS. 3) STAGING SYSTEM: In the course of designing the EMPOWER clinical trial researchers began to create an ALS staging system to be used to present a clearer picture of where patients are in progression and when a potential therapy would work best. Essentially, the stages are based on the total loss (not impairment) of four critical categories including walking, eating, swallowing, and breathing. The number of areas a patient has lost would be represented by

HOPE and help Our recent Hope and Help luncheon on January 30, 2013 at Glazer Children’s Museum was a wonderful opportunity to share our mission and message with members of the community. Attend a free Hope and Help tour in your city! For more information, go to www.alsafl.org.

the stage. The staging system will be presented for feedback and review at the upcoming AAN meeting in March 2013. 4) RILUTEK DOES WORK (A LITTLE): While the trial did not seek to evaluate Rilutek, patients were allowed to take the drug and that information was statistically analyzed. In the EMPOWER trial, Rilutek was shown to extend life by 2-4 months and slow functional decline by 8-10% on average. 5) PLACEBO-CONTROLLED TRIALS ARE NECESSARY: There are many critics of placebo-controlled trials in the ALS community and Biogen/Idec understands this. The company’s researchers vigilantly considered whether it would be possible to put everyone on the drug and compare to a cohort of natural history patients instead of using a placebo. The problem is that the natural history of ALS is changing and statistically it would be impossible to get a conclusive result. Smaller placebo arms are used when possible. However, the EMPOWER trial did utilize a 50% placebo arm because it shortened the time required for the trial. All patients enrolled would have been offered the drug had it been shown to be

Mobility Express, a new community

effective. PatientsLikeMe published a paper stating that

partner with The ALS Association

Dex worked when compared to historical trials but this result

Florida Chapter, will be storing and re-

was proven by the EMPOWER trial to be inaccurate. It is an

installing donated wheelchair lifts for

unfortunate reality but placebo-controlled trials are the only way to get a definite answer.

the ALS community in Florida. Mobility Express is also helping a young couple

6) DNA SEQUENCING: The leading scientists in ALS research

living with ALS with transportation to

suggest that the disease is a result of about 60% genetic

their daughter’s graduation at UF this

factors and 40% environmental impact. As an adjunct initiative Biogen/Idec is sequencing the entire DNA genome of

May.

1000 ALS patients. The cost is $10,000 per patient but the company feels this research will yield valuable insight to the

Thank you Mobility Express – on behalf

heterogenous nature of ALS and identify additional genetic

of the ALS Community and Florida

components.

Chapter Care Services!

Biogen/Idec continues to actively recruit the top minds in neurodegenerative research and bring them into the ALS realm. Everyone hopes the company and its partners will have good news to share in the future.

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 7/1/1212/31/12. Lorraine Anderson - Mary Detienne, Eleanor Hogan Richard Anderson - P. Harris Hines, Lori Schwab & Bill McCullum Daniel Antheil - Paul & Maureen DiRienzo, William Hutchens, Dennis & Joanne Lepold John & Joyce Limbach, Diane Lykes, Marva Novitz, John & Gail Palazzo and Joan McGhee, Cheryl Rudin Robert Arntsen - Scott Arntsen, Give With Liberty Employee Donations Larry Ballowe - Laurie Ballowe Charles Beezley - Eli & Marilyn Adams, Jack & Gloria Jones David Bitner - Donna Barrow, Bill Galvano Campaign Account, Denise Grimsley Senate Campaign Account, Patricia Duffy, Jack Latvala Campaign Account, Market Wise, Nancy Detert for State Senate #23, Ray Pilon Campaign Account, Dr. & Mrs. Ronald Renuart, George Riley, Jr., Charles Steen Susan Blackmun - Sally Blackmun John Boyle - Laura Maggiacomo, Amy Yazbek Peter Bragan - Sherry Murray R.P. Brown/Sue Ricketson Dr. Chester & Paula Anderson, Autobody Dimensions, Inc., Herbert & Joyce Brown, Thomas & Inez Brown, Crestwood Village HOA at Frederick, Christine Dorsett, Michael & Bonnie Gilliom, Bettye Hamlin & Wava Hamlin, William & Shirley Hilton and Tim Hilton, Jim & Sarah Hunter, William & Nancy Lynch, Edward & Betty McCullough, Jane & Jim Parsley, Mary Poole, Harry Rhodes, Sheldon & Barbara Shealer, Charles Thornton, CPA, D.J. Willard, Jr., Jane Williams

Perry Barbara Buckner - Caroline Johnson-Palmer David Burton - Jim & Annette Marsh, Sylvia Watson Mary Campano - Angela Campano Edward Carenza - Bergen County Education Assoc., John & Jennifer Collins, Judith Davis, H. William Howell, Jeanne Howell, Amy Lindhurst, Kathy Muir Grace Carr - Henry & Ellen Murphy and Family, Mary & Tom Reilly Margaret Chilcott - Evelyn Strong Gene Clarke - William & Gloria Collins, Sadie Speck Joseph Connolly - Brian Connolly Neal Crystal - Matina Nimphie Don Curts - Thomas & Barbara Dice Gladys Darling - Carol Boyd, Donna Impink, Robert & Renee King and Family, Katie Palmer, Dr. Douglas Robert Ramm, Jessica Ramm Faustino Davila Pabon - Hector Berio William Dell - Vernon & Jean Adams, Greg & Tracey Brown, Ken & Kris Brown, Leona & Bobby Brown, Darlene Fleek, Josephine McCann, Raymond & Shelbie Morris, Mark & Lisa Pitt, Billy & Jane Starr Mary Delong - Catherine Emory Condit Dow - Robert Brelsford Melvin Einhorn - Lester & Eleanor Einhorn, Marilyn Einhorn Dan Ellis - Angelica Aponte J.W. Arrowsmith, BankFIRST, James Barnes. Jr., Mike Bernstein, Richard Bider, Patricia Calhoun, Jeff Carey, Dorman Financial Management, PA, Richard Ellis, Elmhurst Financial, Brandon Fattore, Libby Fennewald, Randy & Mary Ganger, Edmund Hittson, Paul Klump, Dr. Brian Kozlik, Carolyn Lister, James McIntyre, Vicki Miller, William Moss, Jr., Ann Natyzak, Sharon Perttula, J. Scott Pridgen, Tina Santana, Sandra Taylor

Eugenia Flores - Jefffrey Abram, CPA Pam Franko - Jalene Kulhanek Thea Friedman - Dr. Barbara Fallon Winifred Goodchild - Teri Goodchild Carol Grady - Vivian Mohr Henry â&#x20AC;&#x153;Tipâ&#x20AC;? Graham - Amy Rankin Joseph Graves - Suzanne Graves Nicholas Hall - Harris Corporation Martha Halling - Jeanne Farr, Bernice Field, Janet Gross, John & Pauline Holder, James & Ann Richards Kathleen Hays - James Hays Norman Heikkinen - Judyth Heikkinen Donald Hersh - Phyllis Deitcher Laurence & Jill Hunter Richard Hickman - Mark Callahan Sandy Mohler Catherine Hoeppner - Gerard & Ofelia Hoeppner Ruth Horowitz - Carl Berlinger, Renee Blumenthal, Sondra & George Brucks, Sheila Hecht, Dr. Roselyn & Howard Kessler, Gladys Korn, Walter Listfield, Irving & Marian Nemetsky, Saundra Tufel, Jason & Lisbeth Zeides Doug Jacobs - Sue Shepanek Anne Johnson - The Garden Club of Fleming Island, James & Alice Wais Keith Jones - Jill Hay, Rodney & Susan Ryan, Joan & Charles Young Phyllis Jordan - Cynthia Posner, Vestcom International, Inc. Cynthia Keckler - Mary Glass, Alfred & Barbara Grise, Roger & Marian Maxwell, Gary Patton, Johnna Scott James King - Margaret & John Downey, Alan J. King and Agnes M. King Trust Sharon Kiser - Stella Wellman Leonard Kliegman - Lillian Kliegman Edith Kravitz - Renee Zahery Barbara Kull - Tracy Altemus, Ken Kull Kathleen LeBarron - Nelson

LeBarron Joseph Lemmo - Vincent Porpiglia Patricia Loving - A Pro’s Plastering of Tampa Bay LLC, William & Marilyn Furse, Jim Herrington, Johnnie Herrington, Lucille Loving, Diane McCrorey, R.M. Williams Construction, Inc., Angel Ranon, John & Mary Swanson, Mackey & Kathleen Williams Gwendolyn Ludwig - Susan Ajoc Michael Madigan - Joseph Bagin Ray & Julie Bisbee, Don Foster, Paul Parks, Pella Windows & Doors, Sammy Song John Masciantoni - Frank Baker James McElroy - Pinellas Realtor Organization Margo Melton - J. Douglas & Marva Dunning, John Dunning, Dick & Mary Anne Dunning Joann Morgan - Hazel Bergman, Jane Ferneyhough, Delores Clark Ernst Mueller - John McCallum, The Lakewood Community, Inc. Tom Muessel - Michael Sprouse Richard Noll - Ellen Noll Ridge Nye - Wyndham Bay Point Resort Richard Pascarella - Linda Peters Dennis Peterkins - Joan Peterkins Willie Piner - Ida Rome & Sofia Kossower Robert Piper - Thomas & Eileen Reed Tomás Ramirez - Augustus & Martha Trowbridge Hosein Ramjohn - Nyssa AliRamdss Robert Ray - Sandra Beers, John & Pamela Endacott, Justin Kennedy, Damaris LucioDevlin, Jeffrey & Andrea Lynch and Family, Constance Ray Rocco Riccobono - Martha Riccobono Robert “Skip” Ridge - Kelly Carlson, Steve & Betty Farmer, Thomas & Arlene Johnson, Betty Martin, Joseph & Chas Papich, Marilyn Reilly & Tom Smuller, Dianne Tietz, Marie Torreano, Wallace Welch & Willingham Inc. Eleanor Roark - Wendy Layne David Robertson - Janet Robertson, Kathy Toungette Robert Routh - Rebecca Routh Sidney Rovner - Gwendolyn Rovner

Jerome Samuels - Concetta Anastasi, Barbara & Harold Greenberg Celia Sanchez - Giacomo & Angela Bruni, Dr. Christine Chatas, Rita Diano, Joe Marotta, Sandra Marotta Scott Schneider - The Haskell Company Cinda Schurr - Randall Schurr Faye Scruggs - David & Mary Anne Baker, Barley, McNamara, Wild & Martin, CPA, Beaver Street Fisheries, Bill & Kathy Bowling, Kimberly Brown, Lauren Carleton, Alan Carrington, Columbia Grain & Ingredients, Inc., Gibson & Trudy Durden, Gloria Fabian, Jack & Betsy Ford, Timothy & Paula Gaskin, Global Industries, Inc.,Thelma Greeson, H. Lee Little, Jr., MBA, CPA, LLC, Terry & Mary Hall, Michael Hambrecht, Sheila Hurlbert, Dr. Gordon & Joice Ira, Home Instead Senior Care, Joan & Matthew Johnson, Wayne & Allison Johnston, Stanley & Sharon Kantor, Carmen Kasza, Fay Langer, Rich Liss, Madden & Associates, Inc., Earl & Sibley Maddox, Bennie & Barbara Margol, Arthur Marshall, James & Carole McManus, Denis Plumb, Wayne Hulbert & Susan Pon, Linda & Guy Presnell, Cindy Sadler, Robert & Martha Scruggs, Scott Semko, Charleen Sheriff, Kay Snodgrass, Ann & Weymon Snuggs, Rick Sollman, Susan & Thomas Stevens, Jondeen Terry, Mark & Susan Thompson, Rick Thompson, Norman & Marsha Turner, Dean West, Harold & Lisa White, Albert & Myrna Winter Dae Sun Shin - Jung In Kang Ann Smith - Barbara Steck Olinda “Chichi” Solari - Elphys Alvarez, Amy Bianco, Dominican College, Dr. Audrey Fung, Pablo Gelaf, Dr. Donald Hsu, Kelly Johnson, Caroline Kaplan, Mark Meachem, Dr. Lauren Merkle, Dr. Thomas Nowak, Jorge & Liliana Rosenberg, Barbara Socor, Dr. Colby Lynne Valentine, Karin Wong Kenneth Soler - David & Patricia Crouch, Highland School Building Fund, Linda Murone, Pam Soler Jere Spence - Marianna Spence John Stavlo - Helen Cole

Judith Steininger - Charles & Frances Blanchet Richard & Shirley Pate Dilip Surana - Sapan Bafna, Dan Hartung Bill Swan - Todd Bailey, Kathleen Berlinsky, Jack & Melanie Elkins, Gina Frainetti, John & Meredith Garwood, Darlene Gray, Peter Jarvis, David Lindsay, Michael O’Donnell, Jeannie & Moe Potvin, Beverly Splane, Michelle Switz, Sylvia & Bruce Thompson, Jennifer Travis, Eric Tresh Bruno Tozzi - Mary & James Barnes, Paul & Darlene Mack, George Hernandez & Rebecca Waserstein Helen Valent - Rodney & Rose Ann Bartholomew Adrianna “Jeanne” Van der Sanden - Nadya Abu-Rish, Robert & Cynthia Christy, James Deckert, Johanna Horodenski, Joy Kagele, Jim Macioce, William & Maggie Meentemeyer, Cheryl Rudin, Rochelle Stafford Helmut Van der Sanden - Cheryl Rudin, Rochelle Stafford Anton Van der Sanden David Van Saun - Dr. Charles Carter Eric Vartdal - Judith Vartdal Michael Veitch - Sherry Murray Karen Walch - Kelly Foy, Bernice Shackelford Tommy Wall - Linda Malootian Roger Wilemon - Fernando & Donna Balderrama, Marsha Bowen, Fiona Bowling, Bruce Chiropractic & Comp Care, LLC, Burke Enterprises, Robert Carney Gay Williams - Tom Williams Michael Williams - Edward Bucher, Frank & Katherine Tallon Shirlee Wiseman - Carolyn Salsbury Susan Woodka - Denis Woodka

Every attempt has been made to ensure the accuracy of each gift and each name. If we have made an error, please accept our apology and let us know by contacting Gabby Harrison at gharrison@alsafl.org.

GENERAL GIFTS Gifts of $250 or more, made between 7/1/12-12/31/12. Joanne Gonseski through the AT&T Employee Giving Campaign Barnes Group Foundation, Inc. Bitner & Associates, Government Consultants Nicole Bollinger Sharon Chapman David C.G. Kerr Memorial Fund at the Community Foundation of Tampa Bay, Inc. Community Health Charities of America Community Health Charities of Florida, Inc. Nancy Cook Tim Cummings Dâ&#x20AC;&#x2122;Agostino Foundation Duval Acura Duval Ford Enterprise Holdings Foundation Harold and Mary Perper given through the Fidelity Charitable Gift Fund FNBR Meritt Gardner Bernard Giancola Keith Howson Humana, Inc. Irish 31 JPMorgan Chase & Co. Kate Obstgarten Family Foundation Ernesta Kennedy

Glen Kubiak Erin L. Malone, Esq. William Messer Ingeborg Michaels National Alliance for Caregiving Carolle Neal Jerry Nicolson Mark Oâ&#x20AC;&#x2122;Day PatientsLikeMe Inc. Phi Delta Theta Fraternity, Florida Nu Chapter Phillies Charities, Inc. PJ Callahan Foundation Rays Baseball Foundation The Francis and Gertrude Levett Foundation at the Sabal Trust Company Shell Oil Company Foundation Matching Gifts David L. Smith Tom & Joan Smith Paul Sorrentino Tampa Bay Pro-Am Foundation, Inc. Ted Williams Museum and Hitters Hall of Fame, Inc. The Allstate Foundation The Ralph N. and Anina M. Walter Charitable Trust at The Community Foundation, Inc. The Fund/PostNet International The Grainger Foundation Ronald Turner Bob Vartdal Vincent Villani Scott Welty James Wnek

Providing funds to fight ALS on all fronts- awareness, patient care, advocacy, and research.

Evan J. Yegelwel

The ALS Medical Futures Scholarship Fund Providing scholarships for medical and related programs to children and grandchildren touched by ALS.

Sherry Murray given through the Fidelity Charitable Gift Fund

Maureen Slattery Miller Care Fund Providing funds for respite, home modifications, transportation, and other necessities of patients in financial need.

Robert Miller

HONOR GIFTS Gifts made in honor of a friend, loved one, special occasion or event between 7/1/12-12/31/12. In Honor of Leonard Anderson Marilyn Butler In Honor of Shelly Caldwell Susan Caldwell In Honor of Allison Deitchman Leon & Rosalie Deitchman In Honor of Carlie Deitchman Leon & Rosalie Deitchman In Honor of Lindsay Deitchman Leon & Rosalie Deitchman In Honor of Steve Deitchman Leon & Rosalie Deitchman In Honor of Sandra Diamond Vita Shay-Mastrota In Honor of Chuck and Jenny Easters Mary Chapline In Honor of Kym Edwards Bonnye Hawkins In Honor of Toby Feinstock Carol Clein In Honor of John Finnan Stephanie Hannum In Honor of Elbert Foster Lynn Sapienza In Honor of Mark and Kathie Gannon Lori & Bill McCullum In Honor of Hilde Heard Sara & John Mateja In Honor of Richard Jackson Mae Jackson In Honor of Sonny Judson Miriam Rich

The Evan J. Yegelwel Fund at The ALS Association Florida Chapter

In Honor of Delilah Lancaster Sheena Sexton In Honor of Donna Lesch Doug Lesch In Honor of Karen Levine Leon & Rosalie Deitchman In Honor of Harvey Mackler Rabbi Michael Joseph In Honor of Howard McCarthy Denise Finley In Honor of Mike and Valerie McCausland Mary Chapline In Honor of Don Morrow Raymond & Vivian Byrne In Honor of Sharon Reed Ronald & Grace Galvin In Honor of Tony Russo Leon & Rosalie Deitchman In Honor of Daniel Soyka Carol Boyd Donna Impink Robert & Renee King and Family Katie Palmer Roger Payne Dr. Douglas Ramm Jessica Ramm In Honor of David Temple Carol & John Dumalac In Honor of Michael Williams Donna Williams

Harold L. Wilde ALS Research Fund Providing funds for ALS research

Wade & Paula Tucker

Legacy Society Recognizing and honoring those who have advised us of their plans to leave a future planned gift to The ALS Association Florida Chapter.

Peter Sidney Churchill Anonymous Mrs. Patricia M. Franks Leon Ganung Anonymous Kim A. Hanna Sherry L. Murray Richard Nimphie Francis F. Oppedisano Jacqueline A. Oppedisano Becky Rizzuto James M. Robertson Ruth Shively Thomas D. Stevens, Jr. Marie E. Turianski Eleanor Weidemeyer John H. Weidemeyer For more information about The Legacy Society, contact Kim Hanna at 888-2571717, ext. 105.

RIDE TO DEFEAT ALS & WALK TO DEFEAT ALS GIFTS Ride and Walk gifts of $250 or more made between 7/1/12-12/31/12. Ability Medical Supply, Inc. L. Carl & Lynne Adams Thomas Adams Paul Addamo ADP TotalSource Aetna Health, Inc. Valerie Armstrong Joy Ashlock AT&T Bank of America Matching Gifts Bayada Home Health Care Kim Bertron Laura Billings Kim Brown Burger 21 #2, LLC Andrew Capp Cast Iron Crossfit Central Lake Armor Express Inc. Chevron Humankind Matching Gift Program Coach Matching Gift Program Daniel Conlon Melinda Cordero Mark Cucarese Tim Cummings Steven Davis Stephen Dennison Betty Donaldson Eastern Poultry Distributors Jim Fendya Michael T. Flannery, MD Dr. Iman Forou

Dave Fried Sharon Friedson James Gayle Adrienne Giordano David Grzelak David Heekin Fundacion Gabriel Lewis Galindo Invest In Others Charitable Foundation Faye Johnson Anonymous Stanley Kocienda Frank Kohler Michelle Kohler Dr. A.J. Koval David Lewis Jocelyn Lo Mike Loftus Claire Loud Amelia Lubrano Dr. John I. Malone, Sr. Candace Martin Martin Memorial Health System Matt Caldwell for Florida State House Jodi McCaffrey James McCasland Wayne McClure Robert McGruder Doug & Pat McGuiness Kevin McLeish Edward Meyers Justin Michels Stephen Michels Microsoft Matching Gifts Program Mike Miller Robert Miller Helen Muessel Kim Murano-Bayne New Hope Charities Dick & Ana Maria Nimphie Leanne O’Brien

Rick Pertile Phelps Dunbar, LLP Heather Pitts Gary Polansky Portraits for Patriots, Inc. Pride Mobility Products Corporation William Racaniello Katherine E. Egolf Foundation at the Raymond James Charitable Endowment Fund RedPrairie Michael Regan Ric Bradshaw Campaign Account Peggy Rigsby Dr. Carlos R. Sacasa Edward Safee Maxwell Schoenfelder David Schwartz Scott-McRae Automotive Group, LLLP Setina Mfg. Co., Inc. Dave Simons Skanska USA Building Skylar Slawiak Ellen Smith Richard Snyder MonaLin Solan Denise Sova Robert Speyer Johnny Springer Dr. Barbara A. Stein Tommy Sudderth Cory Tattoli The Baco Che-Na-Wah Bazaar Foundation Toshiba Business Solutions Florida UBS Matching Gift Program UnitedHealthcare Services, Inc. Vickie Gentry and Associates, LLC Kim Viggiano Bill Widmann Mike Young

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 7/1/12 - 12/31/12. Laurence “Ronald” Allenbaugh

Mary Chester

Sharon Harley

Marvin McPeeks

Robert “Skip” Ridge

Ellen “Irene” Stansfield

Victorino Alvarado

Dana Clayton

Ruth Horowitz

Beverly Meharg

Charles Robertson

John Stavlo

Lorraine Anderson

Boonlieng Conaway

John Kassak

Johnny Mingus

David Robertson

Lou Strong

Daniel Antheil

Dr. Timothy Cudd

Ryan Kasten

Joann Morgan

Jerome Samuels

Robert Studley

Florence Apher

Albert Delatre

Loretta Kazawic

Gary Morganson

Celia Sanchez

Bill Swan

Adrianne Babbitt

William Dudley

Sharon Kiser

Janet Novak

Erik Sandberg

Cheryl Taylor

Darlene Baker

Nancy Edrich

Barbara “Bonnie” Kull

Charles Orr

Kathleen Sanders

Larry Thacker

Charles Beezley

Joseph Elliott

Jaime “Jim” Lahore

Bruce Palmer

Herta Schulz

Joan Tharpe

Norman Bensen

Mary Esler

William Lambert

Kenneth Patterson

Faye Scruggs

Phillip Thomas

Richard Besida

Armando Fernandez

Sondra Lavine

Richard Picchi

Gord Shipley

Chris Tolken

Sharon Bishop

Henry Fernandez

Joseph Lemmo

James Pisano

Sobhana Singh

David Van Saun

Nancy Boyle

Eugenia Flores

Al Lewis

Terry Pitchford

Muriel Smith

Tom Wahl

Barbara Brazil

Meridan Freeman

Linda Lieberman

Hosein Ramjohn

Tammy Snyder

Karen Walch

Sara Bringas

Linda Friedman

Jack Lutz

Esperanza Restrepo

Olinda “Chichi” Solari

Paulette Whitlatch

Barbara Buckner

David Glover

Michael Madigan

Grant Rhodes

Kenneth Soler

Bushrod Burns

Timothy Goode

Leon Martinear

Linda Richelew

Dixie Spikes

Edward Carenza

Patricia Gregory

Melanie Mayo

Sue Ricketson

Clotilda St. Aimie

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

SAVE THE DATE! 2013 Tampa Bay Rays ALS Awareness Night Sunday, August 25, 2013 @ 1:30pm More details and ticket information coming soon!

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.