Embed Size (px)
DESCRIPTION
Newsmagazine of The ALS Association Florida Chapter
Citation preview
THE NEWS MAGAZINE OF THE ALS ASSOCIATION FLORIDA CHAPTER
SPRING 2013
ALS Association Funded Research at The University of Miami
A Husband’s Tribute in his Wife’s Memory
Ride to Defeat ALS Highlights
ALSA C C E S S
Lending a Helping HandStatewide ALS loaner closet bridges the gap
Dear Friends,ALS is a devastating disease on all fronts - physically, emotion-ally, 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 care-giver, 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. 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 muchneeded 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,
Kim HannaPresident and CEO
STAFFKim Hanna President and CEO [email protected] - ext. 105
CARE SERVICES
Christine Bright, MSW Care Services Director [email protected] - ext. 130 Annie Blackburn Care Services Admin. Asst. [email protected] - ext. 113
Heran Sisay, MA Care Coordinator, Greater Tampa Bay [email protected] - ext. 103
Aimee Freedman, BSW Care Coordinator, North Central FL [email protected] - ext. 117
Judie Benwick, MSH, MPH, CHES Care Coordinator, North Florida [email protected] - ext. 112
Rhonda Rittenhouse, MA, LMFT Care Coordinator, Central East FL [email protected] - ext. 109
Patricia Stanco, MHS Care Coordinator, South West FL [email protected] - ext. 110
Jessica Bianchi, MBA Care Coordinator, South East FL [email protected] - ext. 122
Katie Mitchell, MSWCare Coordinator, West Central FL [email protected] - ext. 116 Pricilla Puente Spanish Speaking CS Associate [email protected] - ext. 106 FUND DEVELOPMENT Todd Tippin Ride to Defeat ALS [email protected] - ext. 125 Lizzie Danner Walk Manager Jacksonville, Tallahassee [email protected] - ext. 115
Diana Perrault Walk Manager Orlando, Tampa [email protected] - ext. 111 Tiffany Geiger Walk Manager South Florida, Palm Beaches [email protected] - ext. 126
The ALS Association Florida Chapter
3242 Parkside Center Circle | Tampa, FL 33619-0907
Toll Free: 888-257-1717 | 813-637-9000 | www.ALSAFL.org
April Tomberlin Event Associate [email protected] - ext. 118 Emily Pembroke Walk Assistant, Sarasota Walk [email protected] - ext. 127
AWARENESS
Alissa Gutierrez Marketing & Communications Director [email protected] - ext. 120
Patti Palmer Awareness Manager [email protected] - ext. 131 ADMINISTRATION
Lisa Bublinec Office Administrator [email protected] - ext. 108
Robin See Bookkeeper [email protected] - ext. 104
Gabby Harrison Donor Relations Manager [email protected] - ext 101 BOARD OF TRUSTEES
Hiram GreenChairman Tim Cummings Vice Chairman
Warren Nelson Treasurer
James B. Murphy, Jr.Secretary
Wendy BitnerJohn Cannistra Kevin ConnErin L. Malone, Esq.Bob MillerDewayne StandiferDr. Sandra L. Torres
Kim Hanna President and CEO
David Smith Honorary Board Chair
PRESIDENT’S MESSAGE
Maureen’s Loving LegacyMaking Life Easier for People With ALS
3
As most people struggling with ALS know, the disease is extraordinarily
costly. And for some individuals who are not fortunate enough to have pri-vate insurance, the financial demands of Lou Gehrig’s Disease rob them of dignity, peace of mind and often times, the basic comforts of life.
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.
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 soft-spoken, 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 extraor-dinary expenses incurred with ALS.
Maureen stressed that she would like to help people financially devastated by ALS.
Bob says that although Maureen ap-preciated the importance of furthering
ALS research, she knew all too well the financial drain the disease placed on a family.
“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.”
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.
The fund has provided back up bat-teries for power wheelchairs, paid for bathroom modifications so that a shower can accommodate a wheel-chair, 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.
“Thanks to Maureen’s legacy, financially chal-
“Thanks to Maureen’s
legacy, financially
challenged patients
are given a little
peace of mind,”
Kim Hanna said. “The
grants make a huge
difference in their
daily quality of life.”
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.
This ramp was built for an ALS couple in Jacksonville with the help of a CARE assist grant.
Bob and Maureen Miller
Honoring Loved Ones Through ActionFour Individuals Who Lost Spouses to ALS Volunteer for Research Study
BY ALISSA GUTIERREZ
Losing a spouse to a devastating disease is a traumatic
event. When that disease is ALS, many husbands and
wives (most of whom were primary caregivers), exhausted
from their excruciating journey with Lou Gehrig’s Disease,
have conflicting emotions. Understandably, some just need
to get away from ALS for a while to try to make sense of the
competing memories of their partner’s death and the life
shared before ALS.
A group of Jacksonville cALS (Caregivers of ALS) who are
part of The Florida Chapter’s surviving spouse’s social
renewal group called Next Chapter, are continuing to honor
the memories of their loved ones by participating in an
important research study.
According to a study published online on October 31, 2012
in the Journal of Neurology, Neurosurgery and Psychiatry,
a certain protein in the blood may serve as a biomarker,
providing ALS researchers a way to track the progress of
the disease and potentially to determine quickly whether a
patient is responding to therapy. The study was supported
by the EMD/ALS Biomarker Research Fund and is one of 80
active projects in The ALS Association’s Translational
Research Advancing Therapies (TREAT ALS™) portfolio.
This new study showed that elevated blood levels of a
protein called phosphorylated neurofilament heavy subunit
(pNF-H) correlated with more rapid decline in patients with
ALS. Higher levels of pNF-H were also associated with a
greater risk of death
during a twelve-month
period.
“This finding is very
exciting for the ALS
community,” com-
mented Lucie Bruijn,
Ph.D., Chief Scientist
for The ALS Association.
“Although a biomarker is only proven once tested in a clini-
cal trial and shown to be more predictive than the currently
available measure of progression in ALS, this protein appears
to be a very promising biomarker of disease progression in
a relatively large group of patients and should allow us to
conduct shorter clinical trials and speed the search for new
therapies.” A biomarker is a substance or characteristic that
changes with the disease state. Blood cholesterol level is a
biomarker for heart disease risk, for example.
In the study, researchers at the Mayo Clinic in Jacksonville,
Florida, and Emory University in Atlanta, Georgia, measured
the concentration of pNF-H in the blood and in the cerebro-
spinal 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 Jackson-
ville, 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
2008. He and Bobbie volunteered for the multi-staged study
in 2007 – Bobbie as an ALS patient and Tim as a healthy
control.
Other members of Next Chapter who are involved in the
study include Sherry Murray, who lost her husband to ALS
and co-founded the group with Lily Wimpee and Laurie Bal-
lowe, Dick Bell, who lost his wife in 2011 and Roy McLaugh-
Bobbie and Tim Cummings
4
Honoring Loved Ones Through ActionFour Individuals Who Lost Spouses to ALS Volunteer for Research Study
MOVING FORWARDNext Chapter Social Renewal Groups Provide Support and Camaraderie
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 Neu-
rofilament 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
ALS in May of 2011 and passed away
in September 2011 -- a very short time – but in those few
months she went from being a very active person (swim-
ming, scuba diving, tennis, travelling and golfing), to a
person who had no control over her own body. While in
treatment at Mayo, she volunteered to be a in a drug study
and she also donated her brain and spinal cord for research
at Mayo Clinic.”
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
nothing like I thought it would be. I didn’t feel a thing.”
Through their participation in research, an often fulfilling and
self-empowering experience, ALS patients and their families
hold the key to scientific advancement. This-together with
the recognition that palpable progress in ALS research is be-
ing made, even if the translation into effective therapy is an
arduous process-is cause for optimism and hope.
For more information about volunteering for an ALS research project, go to: http://www.alsconsortium.org/search.php
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. Social renewal for widows and widowers.2. Social support connections at ladies’ and men’s luncheons for current ALS spouses.3. 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.
Jacksonville Next Chapter Christmas Party
5
2012 Ride to Defeat ALS
THANK YOU! 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)
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.
Register for the 2013 Tampa Bay and Miami Rides at www.RidetoDefeatALS.org.6
7
WALKthe 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 Dis-ease.
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 cor-poration 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 sup-port. The Walk raises critical funds for patient programs like sup-port 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 an-other 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 contin-ue serving patients and families and fund-ing 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.
University of Miami Team is Pioneering New StudiesAt The FOREFRONT of ALS Research
BY ALISSA GUTIERREZ
The 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 susceptibil-
ity 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 symp-
toms 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 de-
termine 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. Par-
ticipants 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 ap-
pears.”
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 expan-
sion) 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 metabo-
lism 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 be-
tween the genetic abnormality and the clinical presen-
tation; (b) develop a semi-high-throughput method
8
University of Miami Team is Pioneering New Studies
“In the absence of effective treat-
ments for patients with ALS, the op-
portunity for research participation
offers the best hope for patients
and their families.”
Dr. Michael Benatar
At The FOREFRONT of ALS Researchfor 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 Medi-
cine, and an international expert in RNA.
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 self-
empowering 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 effec-
tive therapy is an arduous process, such progress is cause
for optimism and hope.
Dr. Benatar stresses that in the absence of effective treat-
ments for patients with ALS, the opportunity for research par-
ticipation offers the best hope for patients and their families.
GETTING INVOLVEDIn 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 dis-ease 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 clini-cal 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 environ-ments, 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 9
A Helping HandPROVIDING
The Florida Chapter’s statewide loaner closet
For someone with ALS, medical expenses can quickly become dev-
astating. 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.
Currently, we have nine “closets” located throughout the state of Florida. The closets are actually storage spaces within existing DME compa-nies who have partnered with the Florida Chapter to store and maintain our equipment at no cost to us or our patients.
The statewide closets contain:
l Power wheelchairsl Manual wheelchairsl Hospital bedsl Hoyer liftsl Shower equipment (benches, etc.)l Rampsl 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 Ser-vices Director Christine Bright knows firsthand the critical im-portance of our loaner closets.
“We have many people here in Florida who cannot afford to buy the
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.”
Often times, families from out of town who are vacationing in the Sunshine State will call the Florida Chapter to ob-tain 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.
Sue and Dave, a couple from Pennsyl-vania, 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.”
In addition to DME loaner closets, the Florida Chapter also has Augmentative Alternative Communication Device (AAC) closet.
Because of the degenerative nature
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 emotion-ally devastating. Assistive technology
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 Coor-dinators, 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 mobil-ity. The device is then shipped directly to the patient from our home office. The Florida Chapter also provides training to the patient from the device vendor when necessary.
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 troubleshoot-ing 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 Chap-ter, 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 appreci-ated.”
Both the DME and Assistive Technol-ogy 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 ar-rive 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
Ability Medical Supply: 888.572.7603 ext 311
AMI: 727.535.6100 ext 214
Barnes Gainesville: 352.333.2525 ext 553
Barnes Jacksonville: 904.301.1050 ext 551
Barnes Tallahassee: 850.894.4480 ext 551
DME PROVIDERS IN FLORIDABayCare: 727.394.6558
Gulf Coast Rehab: 850.494.0246
United Seating: 813.626.8476 ext 3432
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.
“We have been able to pro-vide single-day wheelchair loans for pALS who need them at events,” Lindsay Dapp said. “Our DME part-ners will bring the chairs to the specific event so our pa-tients 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
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.”
MICHAEL MISION WITH HIS LOANER EYE GAZE DEVICE
To donate an item to our statewide loaner closet, call 888-257-1717, ext. 113.
k e e p i n g u p w i t h
ALS RESEARCHBY PATTI STANCO
Right as 2013 began, the ALS community was blasted
with disheartening headlines stating that the EMPOW-
ER trial and the drug dexpramapexole (“dex” for short) was
not effective in treating ALS. For a community ever-vigilant
for hope -- the short, concise articles delivered little. But
those that live with, care for, and love someone with ALS
know from experience that sometimes less than ideal
circumstances can reveal a silver lining.
The head of the ALS research program at Biogen/Idec,
Neurologist Doug Kerr, MD, recently shared an update on
the trial at a meeting in Washington, DC. A summary of his
comments follow:
“We have tools and targets and ways to investigate ALS that
we never had before.”
Dr. Kerr emphatically asserted that Biogen/Idec is in the
fight for the long haul until a treatment and cure is found.
The company knew when it decided to take on ALS that it
was not an endeavor for the faint-of-heart. The scientists
and executives at Biogen/
Idec remain committed to
ALS.
This is good news for the
ALS community to have
a strong pharmaceutical/
biotechnology company as a
partner in research that will
build on its experience for
future clinical trials.
The results of the EMPOWER
trial (which will be formally
released at the AAN confer-
ence in March) illustrate the
drug development process
and why compounds are
tested in 3 phases. Dex was
tested in Phase II to look
at safety and efficacy and
the results were found to be “intriguing.” To determine if
the drug would be truly safe and effective required a large,
placebo-controlled, Phase
III study. While the results
from the EMPOWER trial
were “negative,” the trial itself
was “successful.” This is an
important distinction because
there are many trials that are not designed well, include too
much “noise” of other factors so scientists cannot draw solid
conclusions, or have any number of problems that prevent
researchers from answering key questions.
Biogen/Idec has hoped that the drug would show a 20%
- 30% reduction in decline which they anticipated would
be reflected in 30 endpoints including the ALS functional
rating scale, respiratory status, and survival. The drug was
shown unequivocally to be ineffective. The researchers
looked carefully at the data to ensure they weren’t missing
something. They looked at demographics, age of onset,
slow progression vs. faster progression, bulbar onset vs.
limb onset, Europe vs. the U.S., and every which way one
could imagine in order find out if the drug worked at all for
any subset of ALS patients. The attempt was unsuccess-
ful. However, several important advances came out of the
EMPOWER trial that will have a long-lasting, positive impact
on future research efforts.
1) RECRUITMENT: The trial successfully recruited almost
1000 patients in five months. This is a remarkable achieve-
ment. Many trials that size might be expected to take up
to two years to recruit that number of patients in multiple
countries. The company did its part by logistically getting all
of the sites ready to be up and running at the same time and
the ALS community did its part by responding quickly. Other
companies considering ALS research will be impressed and
motivated by this noteworthy accomplishment. There are a
surprising number of clinical trials in other fields that never
begin because there are not enough patients willing to partic-
ipate. This is demonstratively not the case in ALS.
2) POWERFUL JOINT RANK ENDPOINT: Historically ALS clinical
trials measure either survival or function. The EMPOWER
trial researchers developed an endpoint that measured both
because particularly with ALS both are equally important.
The endpoint is accepted by FDA and all of the relevant
12
k e e p i n g u p w i t h
ALS RESEARCHEuropean 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
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 com-
munity and Biogen/Idec understands this. The company’s
researchers vigilantly considered whether it would be pos-
sible 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
effective. PatientsLikeMe published a paper stating that
Dex worked when compared to historical trials but this result
was proven by the EMPOWER trial to be inaccurate. It is an
unfortunate reality but placebo-controlled trials are the only
way to get a definite answer.
6) DNA SEQUENCING: The leading scientists in ALS research
suggest that the disease is a result of about 60% genetic
factors and 40% environmental impact. As an adjunct initia-
tive Biogen/Idec is sequencing the entire DNA genome of
1000 ALS patients. The cost is $10,000 per patient but the
company feels this research will yield valuable insight to the
heterogenous nature of ALS and identify additional genetic
components.
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.
13
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.
Mobility Express, a new community
partner with The ALS Association
Florida Chapter, will be storing and re-
installing donated wheelchair lifts for
the ALS community in Florida. Mobility
Express is also helping a young couple
living with ALS with transportation to
their daughter’s graduation at UF this
May.
Thank you Mobility Express – on behalf
of the ALS Community and Florida
Chapter Care Services!
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 7/1/12-
12/31/12.
Gifts to The ALS Association Florida Chapter
14
Lorraine Anderson - Mary Deti-enne, Eleanor HoganRichard Anderson - P. Harris Hines, Lori Schwab & Bill Mc-CullumDaniel Antheil - Paul & Maureen DiRienzo, William Hutchens,Dennis & Joanne LepoldJohn & Joyce Limbach,Diane Lykes, Marva Novitz,John & Gail Palazzo and Joan McGhee, Cheryl RudinRobert Arntsen - Scott Arntsen, Give With Liberty Employee DonationsLarry Ballowe - Laurie BalloweCharles Beezley - Eli & Marilyn Adams, Jack & Gloria JonesDavid Bitner - Donna Barrow,Bill Galvano Campaign Account,Denise Grimsley Senate Cam-paign 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 SteenSusan Blackmun - Sally Black-munJohn Boyle - Laura Maggiacomo,Amy YazbekPeter Bragan - Sherry MurrayR.P. Brown/Sue Ricketson - Dr. Chester & Paula Anderson,Autobody Dimensions, Inc.,Herbert & Joyce Brown,Thomas & Inez Brown,Crestwood Village HOA at Fred-erick, 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
PerryBarbara Buckner - Caroline Johnson-PalmerDavid Burton - Jim & Annette Marsh, Sylvia WatsonMary Campano - Angela Cam-panoEdward Carenza - Bergen County Education Assoc., John & Jennifer Collins, Judith Davis,H. William Howell, Jeanne How-ell, Amy Lindhurst, Kathy MuirGrace Carr - Henry & Ellen Murphy and Family, Mary & Tom ReillyMargaret Chilcott - Evelyn StrongGene Clarke - William & Gloria Collins, Sadie SpeckJoseph Connolly - Brian ConnollyNeal Crystal - Matina NimphieDon Curts - Thomas & Barbara DiceGladys Darling - Carol Boyd,Donna Impink, Robert & Renee King and Family, Katie Palmer,Dr. Douglas Robert Ramm,Jessica RammFaustino Davila Pabon - Hector BerioWilliam Dell - Vernon & Jean Ad-ams, Greg & Tracey Brown,Ken & Kris Brown, Leona & Bob-by Brown, Darlene Fleek,Josephine McCann, Raymond & Shelbie Morris, Mark & Lisa Pitt,Billy & Jane StarrMary Delong - Catherine EmoryCondit Dow - Robert BrelsfordMelvin Einhorn - Lester & Elea-nor Einhorn, Marilyn EinhornDan Ellis - Angelica AponteJ.W. Arrowsmith, BankFIRST,James Barnes. Jr., Mike Bern-stein, Richard Bider, Patricia Calhoun, Jeff Carey, Dorman Financial Management, PA,Richard Ellis, Elmhurst Financial,Brandon Fattore, Libby Fen-newald, 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 Prid-gen, Tina Santana,Sandra Taylor
Eugenia Flores - Jefffrey Abram, CPAPam Franko - Jalene KulhanekThea Friedman - Dr. Barbara Fal-lonWinifred Goodchild - Teri Good-childCarol Grady - Vivian MohrHenry “Tip” Graham - Amy RankinJoseph Graves - Suzanne GravesNicholas Hall - Harris CorporationMartha Halling - Jeanne Farr, Bernice Field, Janet Gross, John & Pauline Holder, James & Ann RichardsKathleen Hays - James HaysNorman Heikkinen - Judyth Heik-kinenDonald Hersh - Phyllis DeitcherLaurence & Jill HunterRichard Hickman - Mark CallahanSandy MohlerCatherine Hoeppner - Gerard & Ofelia HoeppnerRuth 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 ZeidesDoug Jacobs - Sue ShepanekAnne Johnson - The Garden Club of Fleming Island, James & Alice WaisKeith Jones - Jill Hay, Rodney & Susan Ryan, Joan & Charles YoungPhyllis Jordan - Cynthia Posner,Vestcom International, Inc.Cynthia Keckler - Mary Glass,Alfred & Barbara Grise, Roger & Marian Maxwell, Gary Patton,Johnna ScottJames King - Margaret & John Downey, Alan J. King and Agnes M. King TrustSharon Kiser - Stella WellmanLeonard Kliegman - Lillian Klieg-manEdith Kravitz - Renee ZaheryBarbara Kull - Tracy Altemus,Ken KullKathleen LeBarron - Nelson
15
LeBarronJoseph Lemmo - Vincent Porpi-gliaPatricia Loving - A Pro’s Plaster-ing 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 WilliamsGwendolyn Ludwig - Susan AjocMichael Madigan - Joseph BaginRay & Julie Bisbee, Don Foster,Paul Parks, Pella Windows & Doors, Sammy SongJohn Masciantoni - Frank BakerJames McElroy - Pinellas Realtor OrganizationMargo Melton - J. Douglas & Marva Dunning, John Dunning,Dick & Mary Anne DunningJoann Morgan - Hazel Bergman,Jane Ferneyhough, Delores ClarkErnst Mueller - John McCallum,The Lakewood Community, Inc.Tom Muessel - Michael SprouseRichard Noll - Ellen NollRidge Nye - Wyndham Bay Point ResortRichard Pascarella - Linda Pe-tersDennis Peterkins - Joan Peter-kinsWillie Piner - Ida Rome & Sofia KossowerRobert Piper - Thomas & Eileen ReedTomás Ramirez - Augustus & Martha TrowbridgeHosein Ramjohn - Nyssa Ali-RamdssRobert Ray - Sandra Beers,John & Pamela Endacott,Justin Kennedy, Damaris Lucio-Devlin, Jeffrey & Andrea Lynch and Family, Constance RayRocco Riccobono - Martha Ric-cobonoRobert “Skip” Ridge - Kelly Carl-son, Steve & Betty Farmer,Thomas & Arlene Johnson,Betty Martin, Joseph & Chas Papich, Marilyn Reilly & Tom Smuller, Dianne Tietz, Marie Tor-reano, Wallace Welch & Willing-ham Inc.Eleanor Roark - Wendy LayneDavid Robertson - Janet Robert-son, Kathy ToungetteRobert Routh - Rebecca RouthSidney Rovner - Gwendolyn Rovner
Jerome Samuels - Concetta Anastasi, Barbara & Harold GreenbergCelia Sanchez - Giacomo & An-gela Bruni, Dr. Christine Chatas,Rita Diano, Joe Marotta, Sandra MarottaScott Schneider - The Haskell CompanyCinda Schurr - Randall SchurrFaye Scruggs - David & Mary Anne Baker, Barley, McNamara, Wild & Martin, CPA, Beaver Street Fisheries, Bill & Kathy Bowling, Kimberly Brown, Lauren Carleton, Alan Carrington, Colum-bia 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 & Al-lison 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 WinterDae Sun Shin - Jung In KangAnn Smith - Barbara SteckOlinda “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 SolerJere Spence - Marianna SpenceJohn Stavlo - Helen Cole
Judith Steininger - Charles & Frances BlanchetRichard & Shirley PateDilip Surana - Sapan Bafna,Dan HartungBill 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, Jen-nifer Travis, Eric TreshBruno Tozzi - Mary & James Barnes, Paul & Darlene Mack,George Hernandez & Rebecca WasersteinHelen Valent - Rodney & Rose Ann BartholomewAdrianna “Jeanne” Van der San-den - Nadya Abu-Rish, Robert & Cynthia Christy, James Deckert,Johanna Horodenski, Joy Kagele,Jim Macioce, William & Maggie Meentemeyer, Cheryl Rudin,Rochelle StaffordHelmut Van der Sanden - Cheryl Rudin, Rochelle StaffordAnton Van der SandenDavid Van Saun - Dr. Charles CarterEric Vartdal - Judith VartdalMichael Veitch - Sherry MurrayKaren Walch - Kelly Foy, Bernice ShackelfordTommy Wall - Linda MalootianRoger Wilemon - Fernando & Donna Balderrama, Marsha Bowen, Fiona Bowling, Bruce Chiropractic & Comp Care, LLC,Burke Enterprises, Robert Car-neyGay Williams - Tom WilliamsMichael Williams - Edward Bu-cher, Frank & Katherine TallonShirlee Wiseman - Carolyn Sals-burySusan 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
GENERAL GIFTSGifts of $250 or more, made
between 7/1/12-12/31/12.
HONOR GIFTSGifts made in honor of a friend, loved one, special occasion or event between
7/1/12-12/31/12.
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 [email protected].
16
Joanne Gonseski through the AT&T Employee Giving CampaignBarnes Group Foundation, Inc.Bitner & Associates, Government ConsultantsNicole BollingerSharon ChapmanDavid C.G. Kerr Memorial Fund at the Community Foundation of Tampa Bay, Inc.Community Health Charities of AmericaCommunity Health Charities of Florida, Inc.Nancy CookTim CummingsD’Agostino FoundationDuval AcuraDuval FordEnterprise Holdings FoundationHarold and Mary Perper given through the Fidelity Charitable Gift FundFNBRMeritt GardnerBernard GiancolaKeith HowsonHumana, Inc.Irish 31JPMorgan Chase & Co.Kate Obstgarten Family FoundationErnesta Kennedy
Glen KubiakErin L. Malone, Esq.William MesserIngeborg MichaelsNational Alliance for CaregivingCarolle NealJerry NicolsonMark O’DayPatientsLikeMe Inc.Phi Delta Theta Fraternity, Florida Nu ChapterPhillies Charities, Inc.PJ Callahan FoundationRays Baseball FoundationThe Francis and Gertrude Levett Foundation at the Sabal Trust CompanyShell Oil Company Foundation Matching GiftsDavid L. SmithTom & Joan SmithPaul SorrentinoTampa Bay Pro-Am Foundation, Inc.Ted Williams Museum and Hitters Hall of Fame, Inc.The Allstate FoundationThe Ralph N. and Anina M. Walter Charitable Trust at The Community Foundation, Inc.The Fund/PostNet InternationalThe Grainger FoundationRonald TurnerBob VartdalVincent VillaniScott WeltyJames Wnek
In Honor of Leonard Anderson Marilyn ButlerIn Honor of Shelly Caldwell Susan CaldwellIn Honor of Allison Deitchman Leon & Rosalie DeitchmanIn Honor of Carlie Deitchman Leon & Rosalie DeitchmanIn Honor of Lindsay Deitchman Leon & Rosalie DeitchmanIn Honor of Steve Deitchman Leon & Rosalie DeitchmanIn Honor of Sandra Diamond Vita Shay-MastrotaIn Honor of Chuck and Jenny Easters Mary ChaplineIn Honor of Kym Edwards Bonnye HawkinsIn Honor of Toby Feinstock Carol CleinIn Honor of John Finnan Stephanie HannumIn Honor of Elbert Foster Lynn SapienzaIn Honor of Mark and Kathie Gannon Lori & Bill McCullumIn Honor of Hilde Heard Sara & John MatejaIn Honor of Richard Jackson Mae JacksonIn Honor of Sonny Judson Miriam Rich
In Honor of Delilah Lancaster Sheena SextonIn Honor of Donna Lesch Doug LeschIn Honor of Karen Levine Leon & Rosalie DeitchmanIn Honor of Harvey Mackler Rabbi Michael JosephIn Honor of Howard McCarthy Denise FinleyIn Honor of Mike and Valerie McCausland Mary ChaplineIn Honor of Don Morrow Raymond & Vivian ByrneIn Honor of Sharon Reed Ronald & Grace GalvinIn Honor of Tony Russo Leon & Rosalie DeitchmanIn Honor of Daniel SoykaCarol BoydDonna ImpinkRobert & Renee King and FamilyKatie PalmerRoger PayneDr. Douglas RammJessica RammIn Honor of David Temple Carol & John DumalacIn Honor of Michael Williams Donna Williams
The Evan J. Yegelwel Fund at The ALS Association Florida ChapterProviding funds to fight ALS on all fronts- awareness, patient care, advocacy, and research.Evan J. Yegelwel
The ALS Medical Futures Scholarship FundProviding 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 FundProviding funds for respite, home modifications, transportation, and other necessities of patients in financial need. Robert Miller
Harold L. Wilde ALS Research FundProviding funds for ALS researchWade & Paula Tucker
Legacy SocietyRecognizing and honoring those who have advised us of their plans to leave a future planned gift to The ALS Association Florida Chapter. Peter Sidney ChurchillAnonymousMrs. Patricia M. FranksLeon GanungAnonymousKim A. HannaSherry L. MurrayRichard NimphieFrancis F. OppedisanoJacqueline A. OppedisanoBecky RizzutoJames M. RobertsonRuth ShivelyThomas D. Stevens, Jr.Marie E. TurianskiEleanor WeidemeyerJohn H. Weidemeyer
For more information about The Legacy Society, contact Kim Hanna at 888-257-1717, ext. 105.
IN MEMORYWe 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.
17
RIDE TO DEFEAT ALS & WALK TO DEFEAT ALS GIFTSRide and Walk gifts of $250 or more made between 7/1/12-12/31/12.
Ability Medical Supply, Inc.L. Carl & Lynne AdamsThomas AdamsPaul AddamoADP TotalSourceAetna Health, Inc.Valerie ArmstrongJoy AshlockAT&TBank of America Matching GiftsBayada Home Health CareKim BertronLaura BillingsKim BrownBurger 21 #2, LLCAndrew CappCast Iron CrossfitCentral Lake Armor Express Inc.Chevron Humankind Matching Gift ProgramCoach Matching Gift ProgramDaniel ConlonMelinda CorderoMark CucareseTim CummingsSteven DavisStephen DennisonBetty DonaldsonEastern Poultry DistributorsJim FendyaMichael T. Flannery, MDDr. Iman Forou
Dave FriedSharon FriedsonJames GayleAdrienne GiordanoDavid GrzelakDavid HeekinFundacion Gabriel Lewis GalindoInvest In Others Charitable FoundationFaye JohnsonAnonymousStanley KociendaFrank KohlerMichelle KohlerDr. A.J. KovalDavid LewisJocelyn LoMike LoftusClaire LoudAmelia LubranoDr. John I. Malone, Sr.Candace MartinMartin Memorial Health SystemMatt Caldwell for Florida State HouseJodi McCaffreyJames McCaslandWayne McClureRobert McGruderDoug & Pat McGuinessKevin McLeishEdward MeyersJustin MichelsStephen MichelsMicrosoft Matching Gifts ProgramMike MillerRobert MillerHelen MuesselKim Murano-BayneNew Hope CharitiesDick & Ana Maria NimphieLeanne O’Brien
Rick PertilePhelps Dunbar, LLPHeather PittsGary PolanskyPortraits for Patriots, Inc.Pride Mobility Products CorporationWilliam RacanielloKatherine E. Egolf Foundation at the Raymond James Charitable Endow-ment FundRedPrairieMichael ReganRic Bradshaw Campaign AccountPeggy RigsbyDr. Carlos R. SacasaEdward SafeeMaxwell SchoenfelderDavid SchwartzScott-McRae Automotive Group, LLLPSetina Mfg. Co., Inc.Dave SimonsSkanska USA BuildingSkylar SlawiakEllen SmithRichard SnyderMonaLin SolanDenise SovaRobert SpeyerJohnny SpringerDr. Barbara A. SteinTommy SudderthCory TattoliThe Baco Che-Na-Wah Bazaar Foun-dationToshiba Business Solutions FloridaUBS Matching Gift ProgramUnitedHealthcare Services, Inc.Vickie Gentry and Associates, LLCKim ViggianoBill WidmannMike Young
Laurence “Ronald” Allenbaugh
Victorino Alvarado
Lorraine Anderson
Daniel Antheil
Florence Apher
Adrianne Babbitt
Darlene Baker
Charles Beezley
Norman Bensen
Richard Besida
Sharon Bishop
Nancy Boyle
Barbara Brazil
Sara Bringas
Barbara Buckner
Bushrod Burns
Edward Carenza
Mary Chester
Dana Clayton
Boonlieng Conaway
Dr. Timothy Cudd
Albert Delatre
William Dudley
Nancy Edrich
Joseph Elliott
Mary Esler
Armando Fernandez
Henry Fernandez
Eugenia Flores
Meridan Freeman
Linda Friedman
David Glover
Timothy Goode
Patricia Gregory
Sharon Harley
Ruth Horowitz
John Kassak
Ryan Kasten
Loretta Kazawic
Sharon Kiser
Barbara “Bonnie” Kull
Jaime “Jim” Lahore
William Lambert
Sondra Lavine
Joseph Lemmo
Al Lewis
Linda Lieberman
Jack Lutz
Michael Madigan
Leon Martinear
Melanie Mayo
Marvin McPeeks
Beverly Meharg
Johnny Mingus
Joann Morgan
Gary Morganson
Janet Novak
Charles Orr
Bruce Palmer
Kenneth Patterson
Richard Picchi
James Pisano
Terry Pitchford
Hosein Ramjohn
Esperanza Restrepo
Grant Rhodes
Linda Richelew
Sue Ricketson
Robert “Skip” Ridge
Charles Robertson
David Robertson
Jerome Samuels
Celia Sanchez
Erik Sandberg
Kathleen Sanders
Herta Schulz
Faye Scruggs
Gord Shipley
Sobhana Singh
Muriel Smith
Tammy Snyder
Olinda “Chichi” Solari
Kenneth Soler
Dixie Spikes
Clotilda St. Aimie
Ellen “Irene” Stansfield
John Stavlo
Lou Strong
Robert Studley
Bill Swan
Cheryl Taylor
Larry Thacker
Joan Tharpe
Phillip Thomas
Chris Tolken
David Van Saun
Tom Wahl
Karen Walch
Paulette Whitlatch
Florida’s Mobility Equipment DealersPremiere
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.
The Bruno Meridian mounts on your trailer hitch and can carry scooters and manypowered wheelchairs. The Meridian is light weight and folds up out of the way whennot in use.
TAS
.
Wheelchair Accessible For larger individuals or larger wheelchairsthe full-sized van offers the best mobility solution. Easily transports family members and additional medical equipment with ease.
Full-sized
Served in the Military? Ask us aboutAUTO MOBILITY SALES
LAKE WORTH, POMPANO,
MIAMI & THE GOLD COAST
1-877-292-0054www.automobilitysales.com
Meridian
RIDE-AWAYHANDICAP EQUIPMENT
TAMPA BAY, THE TREASURE COAST, THE GULF COAST & CENTRAL FLORIDA
888-RIDE-AWAYwww.Ride-AwayTampa.com
Joey
recent updates in VA benefits
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!
Minivans
Over the years, wheelchair accessible minivans have become the popular choice in the vehicle modification industry because of their drivability, appearance and overall appeal.
www.automobilitysales.com
Florida’s Mobility Equipment DealersPremiere
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.
The Bruno Meridian mounts on your trailer hitch and can carry scooters and manypowered wheelchairs. The Meridian is light weight and folds up out of the way whennot in use.
TAS
.
Wheelchair Accessible For larger individuals or larger wheelchairsthe full-sized van offers the best mobility solution. Easily transports family members and additional medical equipment with ease.
Full-sized
Served in the Military? Ask us aboutAUTO MOBILITY SALES
LAKE WORTH, POMPANO,
MIAMI & THE GOLD COAST
1-877-292-0054www.automobilitysales.com
Meridian
RIDE-AWAYHANDICAP EQUIPMENT
TAMPA BAY, THE TREASURE COAST, THE GULF COAST & CENTRAL FLORIDA
888-RIDE-AWAYwww.Ride-AwayTampa.com
Joey
recent updates in VA benefits
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!
Minivans
Over the years, wheelchair accessible minivans have become the popular choice in the vehicle modification industry because of their drivability, appearance and overall appeal.
www.automobilitysales.com www.Ride-AwayTampa.com
Support GroupsJoin 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.
Visit www.ALSAFL.org or call us at 888-257-1717 for support group dates and directions.
Follow us on the web:
DESIGN BY ALISSA GUTIERREZ
Boynton BeachCharlotteDaytona-Ormond BeachFort MyersGainesvilleHighlandsJacksonvilleThe VillagesManatee-SarasotaMelbourne
NaplesOcalaOrlandoPensacolaTallahasseeTampaTreasure Coast/StuartWestonVero Beach
NONPROFIT ORG US POSTAGE
PAIDTAMPA FL
Permit No 2910
The ALS Association Florida Chapter, Inc. 3242 Parkside Center Circle Tampa, FL 33619-0907
The ALS AssociationFlorida Chapter
SAVE THE DATE!
2013 Tampa Bay Rays ALS Awareness Night
Sunday, August 25, 2013 @ 1:30pm
More details and ticket information coming soon!
