ALS Access Magazine - Winter 2016

THE NEWS MAGAZINE OF THE ALS ASSOCIATION FLORIDA CHAPTER

ALS A C C E S S

Until There is a Cure,

There is Care.

Learn More About the Care Services Team and Statewide ALS Association Certified Centers of Excellence and Recognized Treatment Centers

WINTER 2016

STAFF

Todd Loomis

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

Sarasota/Ride to Defeat ALS tloomis@alsafl.org - ext. 115

CARE SERVICES

Garnet Bailey

Vice President, Care Services ahern@alsafl.org - ext. 130

Greater Tampa Bay gbailey@alsafl.org - ext. 125

Tiana Deas, MS, CRC

Suehay Echeverri

Kim Hanna

Andrea Hern, MA, LMHC, LCAC

Regional Care Manager, North Florida tdeas@alsafl.org - ext. 117

Heran Sisay, MA Regional Care Manager, West Central Florida hsisay@alsafl.org - ext. 103

Regional Development Manager,

Regional Development Manager,

Regional Development Manager,

Central Florida secheverri@alsafl.org - ext. 131

AWARENESS

Judie Benwick, MSH, MPH, CHES

Julie Niehoff Marketing & Communications Director jniehoff@alsafl.org - ext. 120

Regional Care Manager, Northwest Florida jbenwick@alsafl.org - ext. 112

ADMINISTRATION

Marixa Salgado, MSW Regional Care Manager, East Central Florida msalgado@alsafl.org - ext. 109

Patricia Stanco, MHS Regional Care Manager, Southwest Florida pstanco@alsafl.org - ext. 110

Jessica Bianchi, MBA Regional Care Manager, Southeast Florida jbianchi@alsafl.org - ext. 122

Lisa Bublinec Director of HR & Office Administration lbublinec@alsafl.org - ext. 108 Robin See Bookkeeper rsee@alsafl.org - ext. 104 Gabby Harrison Donor Relations Director gharrison@alsafl.org - ext. 101 Samantha Luke Administrative Assistant sluke@alsafl.org - ext. 107

Elke Perez, MSW Regional Care Manager, Miami/Dade County eperez@alsafl.org - ext. 116

Patricia Chamorro, MA Quality/Grant/Volunteer Manager pchamorro@alsafl.org - ext. 118

BOARD OF TRUSTEES Tim Cummings Chairman

Dr. Sandi Torres 1st Vice Chairman Jan Berger Secretary

FUND DEVELOPMENT

Glenn Stambaugh Treasurer

Fund Development Director, Walk to Defeat ALS®/Ride to Defeat ALS dperrault@alsafl.org - ext. 111

Hiram Green Immediate Past Chairman

Diana Perrault

Kaila Williams Senior Regional Development Manager, Southeast Florida kwilliams@alsafl.org - ext. 119

Luisana Hung Salazar Regional Development Manager,

Miami/Dade County lhungsalazar@alsafl.org - ext. 114 Carmen Stokes Regional Development Manager, North Florida cstokes@alsafl.org - ext. 121

Renate Armitage Wendy Bitner John Cannistra Kevin Conn Hampton Graham Ken Griffin Robert Miller Warren Nelson DeWayne Standifer Kim Hanna President and CEO David Smith Honorary Board Chair

The ALS Association Florida Chapter 2

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

PRESIDENT’S MESSAGE Another year has come and gone and as I look back, I ask myself, “where has the time gone? How have we progressed, and where do we go from here?” Never before in the history of this disease have so many scientists and researchers been working together to help find effective Kim Hanna treatments and a cure for ALS. And I’m very proud to report The ALS Association is truly leading the charge in this worldwide collaborative effort. But until there is a cure, there must be care.

At the Florida Chapter, “until there’s a cure, there must be care” is our mantra. ALS is not only physically destructive, but financially and emotionally devastating as well. All the services and programs provided by Care Services are free of charge and funded solely through Chapter fundraising efforts. These services and programs are critical to the patients, caregivers, and families who depend on us, helping to provide the best quality of life possible to those who are living with this disease right here in Florida.

Things like our Equipment Loan Program can make all the difference in the lives of people living with ALS: from a power wheelchair that allows someone to leave their home for the first time since losing their ability to walk, to a communication device that allows someone to communicate with their loved ones and caregivers for the first time since losing their voice. Our goal is to provide as many people living with ALS the quality of life they so deserve, one that we all tend to take for granted every day.

None of this would be possible without the ongoing hard work and generosity from our donors, supporters, and volunteers. On behalf of the Board of Trustees, staff and volunteers at The ALS Association Florida Chapter, I’d like to thank you for all that you do to help support the fulfillment of our mission.

Charity Navigator awarded The ALS Association Florida Chapter four stars, indicating that the Chapter adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way.

Combined Federal Campaign number CFC #69097

The Tampa Bay Rays and Miami Marlins Join the Team to Help “Strike Out ALS” in 2015!

The 2015 ALS Awareness Game with the Tampa Bay Rays took place July 26th at Tropicana Field as the Rays took on the Baltimore Orioles. The afternoon game was a fun-filled, family-friendly experience to help raise awareness of ALS. With the purchase of a game ticket, participants received a free “Strike Out ALS” t-shirt to wear during the game - everyone knew who was with our group! The pre-game activities included the throwing out of the first pitch and the reading of Lou Gehrig’s famous speech, delivered by Andy Freed, radio broadcaster for the Rays. The Florida Chapter was presented with a check from the Rays for over $16,000, proceeds from Rays Fan Fest – we truly appreciate their ongoing support! We were also very fortunate to have Congressman Gus Bilirakis in attendance, an incredible advocate for ALS and friend of the Chapter.

On August 22nd, The Miami Marlins took on the Philadelphia Phillies during our first ALS Awareness Night at Marlins Park. We started off the night with a pre-game ice bucket challenge with pitcher, Jose Fernandez, Marlins’ broadcaster, Rich Waltz, and a Marlins’ employee recently diagnosed with ALS - #EveryAugustUntilACure! A few lucky fans were treated to pregame batting practice and a couple of children with the group were able to participate in the on-field pregame activities, an experience they will surely never forget!

All-in-all, it was a great night to help raise awareness of ALS and we look forward to the game this year! Visit our website for game details and tickets later this summer!

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Until There is a Cure, There is Care.

The ALS Association Florida Chapter Care Services Staff and ALS Centers of Excellence & Recognized Treatment Centers team up to provide comprehensive care and support to those living with ALS. Receiving the diagnosis of ALS is overwhelming physically, emotionally, and financially for all of those involved: the person diagnosed as well as their family, friends and life support network. With no effective treatment or cure to date, the question of where to turn for help and support is essential to answer.

The Florida Chapter Care Services Team offers comprehensive support and resources for persons diagnosed with ALS, their families, and caregivers. The goal is to create an informed, empowered, and well cared for ALS community in Florida by providing services and

assistance to persons living with ALS and members of their support network struggling with the many challenges related to the disease.

The Chapter has teamed up with some of the best ALS physicians and clinics in the state, ensuring that people living with ALS have access to state-of-the-art, ALSspecialized care. The ALS Association Certified Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere modeled after the criteria of The ALS Association Center Program.SM

“Here at USF, our collaboration with The ALS Association Florida Chapter began even before the clinic was founded. Working side-by-side with Kim Hanna and other ALS Association leadership, we were able to recruit donors and to develop state initiatives which made the creation and continuing success of the USF ALS clinic a reality. The clinic has brought much needed stateof-the-art multi-disciplinary care to ALS patients in the Tampa metropolitan area and to the entire west coast of Florida, and the ALS Center, which was created with the founding of the clinic, is carrying out cutting edge

Meet the New Faces on the Care Services Team Thanks to the additional support we received from the 2014 Ice Bucket Challenge, the Chapter has been able to expand its Care Services Team to meet the increasing needs for persons living with ALS in the state of Florida. Visit www.ALSAFL.org to “meet” each team member.

PICTURED TOP ROW: Carmen Stokes, Regional Development Manager; Andrea Hern, Vice President - Care Services; Elke Perez, Regional Care Manager - Miami-Dade; Tiana Deas, Regional Care Manager - Jacksonville PICTURED BOTTOM ROW: Heran Sisay, Regional Care Manager - Central Florida West; Marixa Salgado, Regional Care Manager - Central Florida East; Jessica Bianchi - Regional Care Manager Southeast Florida NOT PICTURED: Patti Stanco, Regional Care Manager - Southwest Florida; Judie Benwick, Regional Care Manager - Northeast Florida 4

research to bring new and more effective therapies of all kinds to ALS patients throughout the United States," said Dr. Clifton Gooch, M.D., Professor and Chair, Department of Neurology, Director, USF Neuroscience Collaborative, University of South Florida.

This unique model brings together a team of medical professionals specially trained to meet the needs of those living with ALS, allowing the patient to receive care from each discipline during a single visit. A multidisciplinary team typically includes a neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a nurse, a registered dietician, a psychologist or psychiatrist, a speech and language pathologist, a social worker, and an ALS Association Chapter Liaison.

The Chapter’s Regional Care Managers serve as the liaison between the clinics and patients, and work right alongside the clinic staff during ALS clinic days. They provide the linkages to recommended equipment and services and facilitate access through sometimes very cumbersome processes.

They are experts on ALS and are aware of the necessary resources regionally to help patients make these incredibly important connections. Often times these managers are in the background, connecting dots, making segues, finding resources, and generally providing the glue that helps

hold the care together.

The Florida Chapter, with the help of the Care Sevices Team, provides a wide range of free services and programs including care consultation, ALS education and training programs and resources, Resource Support Groups, Equipment Loan Program, financial aid to people living with ALS, support for nationally-directed research programs, and local and nationally-directed advocacy programs.

“The Regional Care Manager is often times the compassionate ear that can help inform, educate and guide. The staff work very hard, and are vigilant in their care. They are the core of support for our clients.” said Andrea Hern, Vice President – Care Services. “And the notes of appreciation we receive from families go so far to reaffirm the work they do and let them know they are making a positive impact.”

Combining the treatment from the specialized ALS Clinics with the ongoing care and support provided by the Regional Care Managers presents state-of-the-art, cohesive care for those diagnosed with ALS. As the work continues to find effective treatment and a cure for ALS, the Chapter staff continues to team with the best providers to help those affected with ALS live the best quality of life possible. Until there is a cure, there is care.

ABOVE: Regional Care Manager in MiamiDade , Elke Perez, and mutidisciplinary team member, Ramiro Tavel, Respiratory Therapist, on clinic day at University of Miami Kessenich Family ALS Center of Excellence.

For more information about our Care Services team and the services we provide, please visit our website at www.

ALSAFL.org or call 888.257.1717.

Visit any of the facilities in our statewide system of ALS clinics sponsored by The ALS Association Florida Chapter and the State of Florida, Department of Health including:

University of Miami Kessenich Family ALS Center of Excellence Miami, FL University of South Florida ALS Center of Excellence Tampa, FL Mayo Clinic Jacksonville ALS Center of Excellence Jacksonville, FL University of Florida Health ALS Recognized Treatment Center Jacksonville, FL Lee Memorial Health Systems ALS Recognized Treatment Center Ft. Myers, FL 5

Ticket To Freedom: The Todd Kumnick Story

While visiting his doctor on April 4, 2004, 40-year old Todd Kumnick heard those three devastating words, “You have ALS.” After experiencing some slight slurring in his speech and weakness in his right hand, he began the arduous process of seeing numerous doctors and specialists, trying to find out what was causing it. He and his family would never have imagined he would be diagnosed with bulbar onset amyotrophic lateral sclerosis (ALS), and their lives would be forever changed.

“Todd was everyone’s best friend, very close to his family and friends, known by all to be the jokester of the group and deliver the best hugs,” said his sister, Sherri, “People loved him

and gravitated to him.” But Todd was also known for his incredible inner strength and determination, so he immediately made the conscious decision to fight; he was determined he was going to beat the disease, not let it beat him. He was going to LIVE with ALS. “He never wanted anyone to feel sorry for him. He said God gave it to him for a reason,” said Sherri. Todd became very active in the ALS community, working closely with the Florida Chapter.

He created a team of family and friends and participated in five different Palm Beach Walk to ® Defeat ALS events. Known as “P’Nuts Pals” (named after Todd’s beloved Westie, Peanut), Todd’s team went on to raise more than $90,000 for the Chapter. He

BELOW: From Left, John Michael, Sherri, Bruce, Ginger, Peanut, Todd and Jeanette.

sent emails and letters to D.C., telling his story to help advocate for people all over the world living with this disease, determined to help make a difference.

Todd also took on a role as a mentor to many other ALS patients in the area. He began participating in the Chapter Resource Support Groups and took on a leadership role with many of those that attended, helping to answer questions, provide advice from his own experience, and just listen when they needed someone.

Even when Todd lost his voice, he continued to communicate through his eye gaze device and computer. Determined to be a positive role model for those living with the disease, Todd always provided words of wisdom, strength, and encouragement to all he came in contact with. “He was like ‘the Godfather’ of the support groups,” said his father, Bruce.

“He took control of his life and used the humor in his soul. He was never a victim; he was an ambassador of the disease.”

“Todd was the man that coined the phrase, ‘Positive Mental Attitude – PMA’,” said Sherri.

And he lived with that “PMA” every day of his life. “Todd has taught us to never lose sight of the power of a positive mental attitude. He has taught us how to endure and fight for your life, the precious life we live every day, in the most heroic way imaginable. Todd taught us

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about endurance and how to face our fears and be the best person you can be.” said Sherri.

On August 17, 2015, after a long, twelve-year battle with ALS, Todd Kumnick passed away peacefully in his home surrounded by those he loved.

“He passed with a smile on his face, just the way he always was.” said Sherri.

In November, Todd’s family decided they wanted to find a way to carry on Todd’s incredible legacy. Upon donating most of his equipment to the Chapter, the final piece was his beloved power wheelchair, his “ticket to freedom” as he always referred to it. They knew they had to do something special with it.

With the help and collaboration of the Chapter staff, The Todd Kumnick Freedom Fund at The ALS Association Florida Chapter was created to help meet the mobility challenges of those suffering from ALS and their families. “It’s about improving the lives of ALS patients through the legacy of equipment to those in need.” said Kim Hanna, President and CEO of the Chapter.

The establishment of The Todd Kumnick Freedom Fund serves as a lasting legacy and tribute to its significant role in helping patients cope with the devastating physical repercussions of the disease.

It is designed to keep Todd’s beloved power wheelchair in perpetual motion by lending it to patients who might not otherwise have the ability or opportunity to get one themselves.

bravery will be remembered by all that knew him as they face challenges in their lives,” said his Mother, Jeanette. “They will remember Todd and his Positive Mental Attitude and never ending smile that he gave to all. Our biggest honor to Todd is continuing to share his everlasting love and warm heart to all that come into our lives by expressing Todd’s love of life and love to others. So sad that his speech was taken from him, for I know that to the end he would have been helping others cope with this terrible disease.”

For more information about The Todd Kumnick Freedom Fund, or how you can help, please visit www.ALSAFL.org or call 888.257.1717.

TOP RIGHT: Todd and Peanut enjoying the afternoon sunshine in the back yard.

RIGHT: Todd spending time at the beach with his nephew, John Michael.

LOWER RIGHT: Todd taking in the sunshine.

BELOW: Picture of the plaque that has been attached to Todd’s power wheelchair which was donated to the Chapter. Reads “Positive Mental Attitude. Keep On Rollin!”

“His strength, kindness, and 7

The Rick and Sherry Murray Medical Futures Scholarship Awards Rick and Sherry Murray met and were married in 1964 in Pensacola, FL, where Rick was training for a career in Naval Aviation. Over the course of his 25 years in the Navy, the Murray family traveled all over the globe.

Upon his retirement, Rick and Sherry returned to Jacksonville, where they had served their first tour of duty nearly 3 decades earlier.

Rick and Sherry’s active lifestyle of tennis and traveling was curtailed in 1999 by Rick’s ALS diagnosis. After receiving the news of life expectancy of 3 years, Rick’s competitive spirit rose to the challenge and he nearly tripled that prognosis. During that time, Rick and Sherry found new ways to stay active, particularly through increased charitable work and philanthropic giving in the Jacksonville area. Together, they became tireless advocates for ALS research and awareness by participating in Walks, giving

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speeches to support groups, visiting with congressional representatives, publishing the motivational book - Rick’s Reflections - and helping organize the first Lou Gehrig Day for the Jacksonville Suns.

In fact, Rick attended the ALS awareness event at the Suns’ ballpark in 90-degree heat, just 3 days before he died.

Following his passing, Sherry doubled her community involvement and philanthropic efforts. She became a founding volunteer of the Florida Chapter’s “Next Chapter” program, a social renewal group for those who have lost a spouse to ALS, with a special emphasis on raising awareness of the unique struggles that caregivers face during a loved one’s battle with a terminal illness. A lifelong learner and educator herself, Sherry was especially eager to assist others in achieving their dreams

ABOVE: Copies of Rick’s book, Rick’s Reflections, now given out to all scholarship award winners from the Murray Family.

by expanding their educational opportunities. To this end, she established several scholarships, including the ALS Medical Futures Scholarship in 2013. Sadly, Sherry succumbed to her own battle with cancer in 2014, but not before leaving an indelible imprint on the philanthropic community of Jacksonville.

Today, Rick and Sherry’s three children and seven grandchildren keep their philanthropic spirit alive through numerous causes and scholarships. They are proud to continue this scholarship, now named The Rick and Sherry Murray Medical Futures Scholarship, which is designed to help the spouses, children, and grandchildren of those who are living with ALS or have lost their battle, and whose lives have been changed as a result of that experience - thus impacting their decisions to enter the medical field as a way of making a difference for future patients of any disease.

RIGHT: From left, Rick and Sherry’s son, Mark, Rick Murray, and Sherry Murray on Mark’s graduation day from Davidson College.

2015 Recipients of The Rick and Sherry Murray Medical Futures Scholarship The Rick and Sherry Murray Medical Futures Scholarship is for students who have, or have had, a spouse, parent, or grandparent diagnosed with ALS, also known as Lou Gehrig’s Disease, and who want to pursue a degree in the medical profession as a result of their experience.

Kelsey Hundley Kelsey Hundley is a second year M.D. student at the University of South Florida Morsani College of Medicine. When she was nine years old, her father was diagnosed with ALS. She encountered many different physicians treating her father, and saw the positive impact that a caring doctor could make on a patient and their family during a difficult time.

Kelsey attended the University of Florida where she studied Microbiology then completed a Master’s degree in Medical Sciences at the University of South Florida. She is currently a graduate scholar of the Kosove Society, an organization dedicated to leadership and community service. Kelsey is president of the Dermatology Interest Group, where she volunteers to teach middle school students about sun protection and completes public health research on layperson skin cancer education in the Tampa Bay community. She is also the Supply Coordinator of Tampa Bay Street Medicine, an organization that provides free medical care to homeless patients. In her free time, she enjoys traveling, swimming and spending time with her family.

Chelsea Hill Chelsea Hill is a junior at the University of Florida, studying in the Bachelor of Health Science program. When she was in high school, her mother was diagnosed with ALS. After graduating with her AA degree in Psychology from community college, she took time off from school and spent the next two years as her mother’s primary caregiver. The tragic passing of her mother at such a young age triggered her to change her scholastic major from Psychology to Health Science so she could begin to pursue a career as a Neurologist, rather than a Psychiatrist. She is going to school full time and working part time as a clinician on weekends. In her free time, she enjoys camping and visiting theme parks with her boyfriend, Andrew.

For more information about the 2016 scholarship, visit www.ALSFL.org.

Application deadline is July 15, 2016.

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We Rode, We Ran, and We Rolled. Thank You to All Who Came Out to Support the Ride. Run. Roll to Defeat ALS! On November 7th, we hosted our Ride. Run. Roll. to Defeat ALS and had a fantastic turnout with almost 300 in attendance this year! It was a beautiful, WARM, sunny day for all of the riders, runners and walkers who came out to participate and support the Florida Chapter. Routes included sections of the Pinellas Trail, Fort De Soto and coastal roads, and for the first time in Florida, a 5K running event was also included - it proved to be an endurance event to #ChallengeALS offering something for everyone.

Participants received support from start to finish with crewed rest stops, SAG vehicles, and the safety team. Upon completing the tour, riders and runners were welcomed back by cheering crowds and finish line festivities that included entertainment, complimentary massages, a healthy lunch, and The Taste of Indian Rocks Beach! We are so thankful for all of the hard work and support we received from all of our participants, volunteers, and sponsors!

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TOP 5 FUNDRAISERS Gary Dassatti - $34,645.91 Warren Nelson - $11,160.00 Vera Murphy-Trayner - $6,155.00 Robert McGruder - $5,590.00 Annie Life - $5,210.00

TOP 5 TEAMS Ride Operations Team - $40,820.91 Team Ohana - $11,160.00 Murphy’s Might - $9,860.00 Dutton’s Mad Dog Support Crew - $9,325.00 Allstate - Helping Hands Ride Team - $9,030.00

South Florida Hosts their Ride Annual “Celebration of Life” Picnic On December 5, Patti Stanco (Regional Care Manager, SW Florida), Andrea Hern (Vice President, Care Services), and Kaila Williams (Regional Development Manager, South Florida) hosted the annual Remembrance and Celebration of Life picnic in Cape Coral, FL. This unique southwest Florida event started several years ago when the Fort Myers Resource Support Group attendees decided to hold a social picnic in lieu of their traditional meeting around the holidays.

The event has grown over time into a combination remembrance and celebration of life. A chaplain starts the remembrance with a prayer, followed by the reading of the names of every person lost to ALS in the state of Florida over the past year.

Surviving family members often attend to hear the name of their loved one read.

After the remembrance, the group enjoys the celebration of life: a barbeque picnic, time together, and shared smiles and laughter.

“Everyone at the event has been touched by ALS in a different way, but it is something all share in common. Understanding that no one is alone on this journey is a great help to many,” said Patti.

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Thank You for Being a Superhero This Year, Miami! ®

On February 26th we hosted our very first Miami-Dade Walk To Defeat ALS in Museum Park, downtown Miami. Even with the threat of rain and minor flooding in the park, the superheroes came out in force! Almost 1,000 participants were treated to unique day-of-event experiences including a fun Kid’s Zone, VIP tents, concerts and more. Already in the planning stages, this fall is sure to be even bigger and better! But we could not do what we do without the amazing support and hard work from all of our sponsors, our volunteers, our teams, and our walkers.

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Register TODAY for a 2016 Walk to Defeat ALS® near you!

Thank you to all of our teams, families and sponsors!

TOP TEAMS 1 - Mina’s ALStars ($9,112.00) 2 - Luis Tewes ($8,280.00) 3 - KK’s Kids ($6,100.00) 4 - The Jerry Rivero Fund ($5,337.00) 5 - Cristina y sus Angeles ($4,380.00) 6 - Team Linda Friedman ($3,449.00) 7 - FIU Phi Delta Theta ($2,815.00) 8 - Verna Talarico ($2,685.00) 9 - Gilda’s Team ($2,145.00) 10 - Smile for Mommie ($2,062.00)

TOP FUNDRAISERS 1 - Felipe Tewes ($4,610.00) 2 - Anne Brannigan ($4,245.00) 3 - Sofia Ballen-Guzman ($2,855.00) 4 - Guillermo Torres ($2,745.00) 5 - Elaine Pasekoff ($2,549.00) 6 - Adam Ramirez ($2,400.00) 7 - Anna Sidan ($1,955.00) 8 - Melanye Shinhoster ($1,585.00) 9 - Brittany Owens ($1,540.00) 10 - Alberto Sosa ($1,290.00)

Visit www.ALSAFL.org for more information.

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Continuing Our Mission of Providing HOPE and HELP to the ALS Community In 2015, we launched our Chapter symposium and research webinar series, Hope and Help. Through our symposiums and webinars, we communicate up-to-date information about what is happening in the ALS community. We want to educate everyone about the devastation Lou Gehrig’s Disease creates for those who are diagnosed, because the more the story is heard, the better chance we will have to find a treatment and a cure.

HOPE. Hope that we can create more awareness about the disease and the need for treatments and a cure. Hope that awareness will lead to funding for the important research happening around the world AND right here in Florida.

And hope that someday and sooner than later - Lou Gehrig’s Disease will not be a death sentence.

As horrific as this disease is, we have HOPE that clinical trials and research will lead to ways to prevent, treat, and cure ALS. And we HELP patients living with the disease through the variety of programs and services that we provide.

On October 15th, we hosted our second HOPE AND HELP SYMPOSIUM in Jacksonville, FL. It was a full day of programs and speakers for people living with ALS, caregivers, families, and ALS supporters. There were sessions on the National ALS Registry, the importance of public

Our goal is to communicate information that provides

2015 Fall Hope and Help Symposium Jacksonville

If you missed our 2015 Symposiums or online research webinars, you can learn more about them on our website. Visit www.ALSAFL.org for details and our upcoming schedule for 2016.

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policy advocacy, caring for persons living with ALS at home, and Mindfulness and Meaning in ALS. There were plenty of opportunities for participants to speak directly to the “experts,” ask questions and learn more about everything from research to care to equipment. The day also included a Town Hall meeting, an awards luncheon, and a vendor hall showcasing some of the latest technologies for ALS patients.

Information and content from both of our 2015 symposiums can be found on our website, and planning for our third annual Hope and Help Symposium is underway and will take place in Orlando this fall.

2015 Hope and Help Webinar Series Pathways in Research

Due to the overwhelming number of requests we receive from our patients, caregivers, and supporters of people with ALS, we are producing an ongoing online webinar series to help deliver more information about research and the latest developments taking place right here in Florida.

Our series features the state’s top ALS researchers who present directly to participants and answer questions LIVE online and over the telephone.

To date, we have been

fortunate to have presentations from researchers at each of our ALS Centers of Excellence: Dr. Tuan Vu M.D. and Dr. Emily Plowman Ph.D. from the University of South Florida, Tampa; Dr. Michael Benatar M.D., Ph.D., University of Miami; and Dr. Kevin Boylan M.D., Mayo Clinic Jacksonville.

Each presenter delivered valuable information regarding the current research projects and clinical trials being conducted at each of these facilities here in Florida.

Recordings of all of the presentations from our webinar series can be found on our website if you were unable to attend.

We are working on our schedule for 2016 so please visit our website for more information or follow us on social media for the latest updates and reminders.

Visit “Hope and Help” on our website for more information.

In the Spotlight...

New York native and Bonita Springs resident, Madeline Kennedy, was diagnosed with ALS in May of 2012.

Although devastated by the diagnosis, Madeline decided she was going to do everything she could to LIVE with ALS, not die from it. “I have now, TODAY, and that is really all any of us have,” says Madeline.

Prior to being diagnosed, Madeline, a wife and mother of four, had been a nurse for 37 years; the last 10 of those spent teaching nursing at Russell Sage College. She was an avid golfer, tennis player, gardener, and community volunteer. Today, she continues to land an occasional putt, plays bridge, and spends much of her time actively advocating and fundraising for ALS research and services on her quest to help find a treatment and cure.

In January of 2015, during a live TV interview she was recording with WINKTV for an ALS golf fundraiser, Madeline, using her adapted golf cart, made a 78 foot putt! The video went viral and she was listed between Tiger Woods and Phil Mickelson on GOLF.com! “I focus on what I CAN do, not what I can’t,” Madeline said.

BELOW: Madeline Kennedy playing golf with her adapted golf cart, allowing her to play from a seated position.

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Did You Know You Can Donate to Our Equipment Loan Program?

The ALS Association Florida Chapter greatly appreciates donations of durable medical equipment (DME), respiratory equipment, and communication devices for use in our Equipment Loan Program. We understand how expensive it is to care for a person living with ALS, and the importance of the equipment needed to provide the best possible quality of life.

We offer temporary loaner equipment, including speech generating devices, to Florida residents with a verified diagnosis of ALS who are uninsured, underinsured, who cannot access their insurance (while in a nursing home or hospice) or who are waiting for insurance approval.

Some of the equipment we accept includes: • Four-wheel walkers with seats and brakes

(also known as rollators) • Lightweight manual wheelchairs • Power wheelchairs • Scooters • Portable ramps • Hospital beds (must be “home hospital style”

electric bed, in four separate pieces) • Hospital tables • Hoyer-type and other patient lifts, seat lifts, etc.

• Alternating pressure mattresses • Lift chairs (at DME loan closet discretion) • Roho Cushions (at DME loan closet discretion)

We accept the following NEW and UNUSED: • Rolling shower chairs • Transfer benches • Transfer boards • Beasy boards Respiratory equipment that is accepted: • Cough assist machines • Suction machines • BiPap/AVAPS machines Augmentative and Alternative Communication (AAC) Equipment that is accepted: • Communication Devices (Tobii, Dynavox, Jabba, etc.)

• Wheelchair and Floor mounts

The Florida Chapter will provide an acknowledgment letter to the donor for tax purposes once the donation is picked up by the DME companies that store and maintain our equipment throughout the state, Ability Medical Supply and NuMotion.

Testimonial from a person living with ALS: “This chair that I have made life so much easier for me. The slide board, it’s just made a whole different difference. I’m able to go out in my yard. I’m able to not use the Hoyer lift, just things are so much easier making my life so much easier and so much easier on my wife. I don’t know how I can put into words how much I appreciate all the help you guys have given me.

Thank you. Thank you. Thank you. Thank you.“

For more information about our Equipment Loan Program and equipment donations, please contact our Care Services Department at 888-257-1717 or visit www.ALSAFL.org.

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When it’s time to focus on the patient, not the disease …

When it’s time to be home with familiar faces …

When both the patient and the caregiver need support …

When the pain is spiritual and emotional, not just physical …

VITAS can help. VITAS® Healthcare provides hospice care wherever the patient calls home. You have a whole team of experts, from nurse to aide to social worker, available to care for the patient, listen to family members, support an exhausted caregiver. After a death, VITAS is there for more than a year to help survivors cope.

VITAS is proud to partner with The ALS Association Florida Chapter and support the Walk to Defeat ALS®.

SINCE 1980

800.723.3233 • VITAS.com

19

Do You Need More Information and Support While Living With ALS? We understand that dealing with ALS is physically, emotionally, and financially devastating for the person living with ALS and their family. The Florida Chapter has numerous Resource Support Groups, free of charge, that provide a caring, supportive, open environment to gather, connect, and talk with one another about the daily struggles encountered with this disease. These groups are open to persons living with ALS, their families, caregivers and friends, and are located around the state to provide opportunities to learn more about living with ALS from others who truly understand the challenges, and to help establish a network of sustained support.

A Chapter Regional Care Manager facilitates each group and has speakers on relevant topics combined with time for attendees to discuss and share information and provide support to one another. If you have not participated before, please feel free to reach out to the group nearest you, or visit www.ALSAFL.org for more information.

North Florida Jacksonville - 1st Wednesday of each month | 2:00 - 4:00pm | CrossRoad Church (UMC) | Room 218 10005 Gate Parkway North | Jacksonville, FL 32246 | Facilitated by Tiana Deas Daytona - 2nd Wednesday of each month | 1:00 - 3:00pm | 575 N. Clyde Morris Blvd. | Daytona, FL 32114 | Facilitated by Marixa Salgado Panhandle/Tallahassee - 2nd Tuesday of each month | 12:00ET, 11:00CT | Phone Group | Facilitated by Judie Benwick

Central Florida Orlando - 1st Wednesday of each month | 2:00 - 4:00pm | Whole Foods | 8003 Turkey Lake Road | Orlando, FL 32819 | Facilitated by Marixa Salgado Brevard - 3rd Wednesday of each month | 2:00 - 4:00pm | One Senior Place | 8085 Spyglass Hill Road Melbourne, FL 32940 | Facilitated by Marixa Salgado The Villages - 4th Wednesday of each month | 1:00 - 3:00pm | Hibiscus Center | 1740 Bailey Trail | The Villages, FL 32162 | Facilitated by Marixa Salgado Hernando - Due to facility renovations, this group is temporarily suspended until further notice | Facilitated by Heran Sisay 20

Tampa - 4th Saturday of each month | 2:00 - 4:00pm | USF Morsani Health Center | 13330 Laurel Dr. Tampa, FL 33612 | Facilitated by Heran Sisay Pinellas - 4th Monday of each month | 2:30 - 4:30pm | Carillon Bay Care Center | 900 Carillon Pkwy | St. Petersburg, FL 33716 | Facilitated by Heran Sisay

Southwest Florida Sarasota/Bradenton - 2nd Tuesday of each month | 12:30 – 2:30 pm | Lakewood Ranch Medical Center | 8330 Lakewood Ranch Blvd. | Bradenton, FL 34202 | Facilitated by Patti Stanco North Port - 4th Wednesday of each month | 1:00 - 3:00pm | Public Library | 13800 Tamiami Trail | North Port, FL 34287 | Facilitated by Patti Stanco Fort Myers - 4th Sunday of each month | 2:00 - 4:00pm | 13601 Plantation Rd. | Fort Myers, FL 33912 Facilitated by Patti Stanco Naples - 2nd Sunday of each month | 1:30 - 3:30pm | Brookdale-North Health Center | 11190 Health Park Blvd. | Naples, FL 34110 | Facilitated by Patti Stanco South Florida Miami-Dade - Spanish Group - 1st Thursday of each month | 2:00 - 4:00pm | Kendall Elks Lodge | 10301 SW 72nd St. | Miami, FL 33173 | Facilitated by Elke Perez Miami-Dade - English Group - 3rd Thursday of each month | 2:00 - 4:00pm | Kendall Elks Lodge | 10301 SW 72nd St. | Miami, FL 33173 | Facilitated by Elke Perez Martin - 1st Tuesday of each month | 3:00 - 5:00pm | Martin Health Systems - Robert and Carol Weissman Cancer Center | 501 E. Osceola St. | Stuart, FL 34995 | Facilitated by Jessica Bianchi Palm Beach - 3rd Tuesday of each month | 1:30 - 3:30pm | Children’s Services Council Palm Beach County | 2300 High Ridge Rd. | Boynton Beach, FL 33426 | Facilitated by Jessica Bianchi Broward - 2nd Tuesday of each month | 1:00 - 3:00pm | Broward Health Weston | 2300 N. Commerce Pkwy. | Weston, FL 33326 | Facilitated by Jessica Bianchi

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Wear a bright shirt, a grass skirt, or lei, we’re planning to celebrate the tropical way!

Join us at one of our statewide Walk to Defeat ALS® events! Form a team, invite your family, friends and co-workers, and help The ALS Association Florida Chapter fight Lou Gehrig’s Disease.

Register today!

2016 Florida Walk Dates: Greater Tampa Bay - March 5th - Elva Rouse Park, St. Petersburg Central Florida - March 12th - Lake Eola, Orlando Broward - March 19th - Vista View Park, Davie Sarasota - March 19th - Phillipi Estate Park, Sarasota Jacksonville - April 2nd - Seven Bridges/Tinseltown Ocala - April 2nd - Jervey Gantt Recreation Complex Palm Beach - April 16th - Okeeheelee Park, West Palm Beach Miami-Dade - September 24th - Bayfront Park, Miami Ft. Myers - November 5th - Miromar Outlets, Estero Tallahassee

- FALL 2016 - TBD

Start a team or sign up as an individual today! Go to:

www.WalktoDefeatALS.org 22

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

MEMORIAL GIFTS Gifts made in memory of a friend or loved one, between 5/1/15 10/31/15.

Yaffa Achizvi - Liora Peleg Audrey Alesio - Katherine and Henry Haggerty William Jay Armstrong - Nancy Casablanca Meg Casalaspi Clyde Folley Richard and Barbara Keating Michael and Patricia Pesci Wilma Pitman Robert and Pam Rank Robert Rosenberg Joanne and George Sawaya Gunter Siemsen Jeffrey Zahka Miriam Zahka Ward Aubrey - Ruth Brady Nancy Bacon - Martin Schwartz James Baker - Jacqueline Baker Micky Barrus - Andrea Mountain Charles Beezley - Frances Beezley Margaret Bicket - Judith Moore John Blankenberg - Robert Coleman Marilyn Curtis David and Carol DiGiacco Richard and Marsha Herbst Allen and Lisa Hibner George and Clara Janet Janet Juneau Sidney and Toni Marshall John and Patricia Ottmar Elsie and Gary Race Wallace and Sue Turner Roy Vanderwall Floyd Bost - Leonard Lentz Jeffrey Boyken - Virginia and John Beaver Bruce and Charlotte Carey Paul Bradarich - Dennis and Barbara Collins Robert Downs Koushik Roy Russell Brandi - Michelle Brandi through Give With Liberty Employee Donations Frank Brandon-Brown - Elizabeth Brandon-Brown Terry Brown - Agnes and Daniel Kuzio 24

Barry Bruck - Arnold and Carole Bergman Michael and Reba Bezner Robert Cooper Tedi and Steven Ignatow Joseph Katz Elaine Burgess - Jennifer Marzo through The Benevity Community Impact Fund Larry Canella - William and Kathleen Barbour Joann and Tony Campanella Sugar Sands Community Club Patricia and Spencer Thornton Ruthanne Wolfe Joe Cartaino - Naples Land Yacht Harbor Residents Association Charles Carter - Edsel Matthews, Jr., PA Clifford Carter - Theresa Roberts Brett Cohen - Harvey Braun Fran Rems Jane Ringel Ronnie Cohen - Sonia Wexler Anthony Cohn - Rita Flatow Robert Cote - Gisela Morris Otto and Doris Schmid Mike Couts - Russ Reed Barbara Cummings - Karen Muscavage Don Curts - Thomas and Barbara Dice Mark David - Eric David Deborah DeBack-Wright - Janet Erwin Oliver Demarco - Russell Craven Dr. Bert DeVries - Lauren Anderson Max and Marjorie Ankney Mary Blue Charles Davis Egbert DeVries Jan DeVries Tina DeVries Eugene and Betty Donati Connie Fortune Jacquelyn Goldman Erik and Sharon Lahti Polly Leipold Michael Roumell James Ruttenberg Billy Tang Dwight and Mary Woy Ernest Dignan - Bernard Quinlan Herbert Dubovy - Carole Forster Elise and Ira Goldman

Barbara and Harold Greenberg Judith Harold A. Thomas Levin Linda Lewis Burton and Elizabeth Marks Arnold and Barbara May Alan Paderewski James and Lillian Sharlet Lillian Speigel and Jerry Gold Janet Zimmerman Rick Dugger - Eddie Yon John Eannel - Maile Statuto Don Edgerly - Shirl Edgerly Melvin Einhorn - Marilyn Einhorn Kenneth Ellis - Sylvia Ellis William Elston - John and Kathleen Kennedy George English - Lynne Maillet Judy Fahey - Michael and Arlene Sobol Annette Farmer - James and Sharon France Robert Ferrell - Robert and Donna Brocker Rita and Jack Grobman Carol Jonson Susan Keenan Beverly Koski Christine Koski Thomas and Sherry Koski Eileen Milton

Janet and Donald Schalk Carolyn Vitolo Allan Flock - Elwood and Phyllis Hurte Becky Massouras Wade-Trim Inc. Elbert Foster - Diane Finn Frank Garcia - DVAL, LLC Lucille Garcia Winifred Goodchild - Teri Goodchild Colonel Douglas Grant - C. William and Carol McGahee Leonard Green - Terry Bible Harold and Chuhwei Chen Charlotte Green Alison Hollingsworth Michelle Kidd Carola Gumucio - Rebecca Boling Cindy Gumucio Dr. Nelson Gumucio Daniel Martucci Richard Williams William Harris - Peter Engel Rodney Hosford - Victor Turner Charles Hummer - Marsha Boer Gerald and Loretta Kay Pierce Katherine E. Egolf through Raymond James Charitable Endowment Fund Lauriston Izlar - Sandra Howell Ruth and Charles Johns Laurie Mullins Sharon Johnson - Karolynn Gritton Kathryn Keating - Ronald Clayton Patrick Keating Sandra Patton Nancy Rawson and Gary Pabst Wendy Robinson Penny Wesley Robert Kemper - Dr. Maria Oehler Joy King - Janice Forbus Ronald Kiepke Leslie Kirschner - Dr. Hilliard Gersten Christopher Knipfing - Diane and Raymond Wright Richard Krebs - Gail Sault through My Tribute Gift Foundation, Inc. Bernice Lavery - Donald and Mary Crosby Tom and Alena Glavinskas Harris, Barrett, Mann, & Dew, PA MaryAnne Koenigsberg Vivian Mann Kelly Stamer Doug Lesch - Victoria Bell Barbara Levinson - Diane Echtermeyer Daniel Lipman - Sheila Lipman Herbert Longsworth - Kenneth and

Carol Mackey through Fidelity Charitable Gift Fund Gwendolyn Ludwig - Susan Ajoc Donna Majka - Thomas and Crystal Barry Angela French Harold and Beverly Keisling James Kenny Richard and Rosemary Kukuk Catherine Majka Donald and Evelyn McNair Jim and Diane McNair Leon and Carole McNair Peggy Pinchbeck Harvey Margolin - Amy Ashinsky Franklin and Edythe Dloss Sandra and Ronnie Rudd Lawrence Markowitz - Doris Markowitz Bob Marler - Jodi Battista Carolyn Boyken Suzanne Burgess Michael Hinn Misty Jones Katrina Neill Barry Reeves Summer Rodman Kristi Siegel Brenda Soto Alfred Massimino - Barbara Spire James Miller - Bruce and Martha Dych Maureen Slattery Miller - Robert Miller Johnny Mingus - Kate Kramer Michael Monjoy - Vivian Holmes Robert Nettina - Jean Mazza and Nick Gentile Freddy Phillips - Michael Breen, Sr. Donna Reddy - Eileen Archer-Gago Sudhakar Reddy - Patricia Berni Diann Cundiff Prakash Kailasa Rammohan Kasarla Goutham Mandadi Usha Polavarapu Ravi Reddy Jyothi Shetty Ric Rittenhouse - Travis Bowman Pamela Gawlik Mary Roberts Craft - Serena Bishop Lori Cartrette James Combs, Jr. Hubert Craft

Forbus Blinds and Screens LLC Nancy Hinton Elizabeth Ingels Linda Jacob Daniel Martucci Melinda McKay Cathy Palmer Elizabeth Palubin Maureen Ringley Sherry Sparks Terry Tarrant, Jr. Annamarie Villemaire Kathleen Sanders - Todd Sanders Sandy Schraf - Bernard Dautch Janice Sieling - Kenneth and Dorothy Ports Joel Skibbe - Farida Ali-Bakhsh Michelle Bryan Kristin Carver Hopkins Tammy Coughlin Michael and Debra Heald Misty Pancake Faye Reed Jason and Ana Somers Wilson Elementary PTA Sharon Woodis

Volunteers Needed Want to help out?

Volunteers are always needed statewide to help the Florida Chapter with various tasks.

Help is needed for our Walk and Ride to Defeat ALS events, awareness events, office assistance, and various other volunteer duties.

Email Patricia Chamorro at pchamorro@alsafl.org if you would like to help.

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

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Allen Soto - Nancy Hamilton Jere Spence - Marianna Spence Susan Spencer-Wendel - Ellen Swenson Susan Spillers - Rebecca Boling Hubert Craft Sharon Spisok - Richard and Eunice Nerber Rob Squires - Randall Squires John Sternig - Roberta Voorhees Terry Stibal - Laureate Gamma Sigma James Sullivan - Rebekah and Carl Syler Larry Sumner - Barbara Williams Linda Swift - Carol and Ray Langlois Norman and Glenna McFarland Jock Terry - Faith Terry Sandra Troyer - Bradford Middle School Gerald Turianski - Marie Turianski Eric Vartdal - Timothy Darby, Esq. Phillip Waldie - City Thirft Michael Weaver - Tommy Sudderth through Donatic Elizabeth Castro through Donatic Peter Gregson Judy Stoldt Felicia Williams - Albertelli Law Dr. Grace Wolff - Maria Baron Maria Carmona Estherlidia Castillo Judith Destito Carlos Diaz Barbara and William Finch June Frost

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Marisol Gonzalez Blanca Hager Stan and Marilyn Kaltenborn Ainara Mantellini Joan and Philip Murphy Kay and Bob Page Nilo and Norma Priede Ming-Lon and Su-Fen Young

WALK AND RIDE TO DEFEAT ALS GIFTS Gifts of $250 or more, made between 5/1/15 - 10/31/15.

Ability Medical Supply, Inc. Joyce Abrams AG Flying Service Inc. Rishad Alikhan Jorge Alvarez American Association of University Women American Legion Auxiliary Garner Grant Unit 101 AOG Aviation Corporation Carolina Armas Ed Armstrong Catherine Augenstein Linda Aversa Bagwell Lumber Company of Avon Park, Inc. Adriana Ballen Sofia Ballen-Guzman Bank of America Charitable Foundation Wendy Barber

Daniel Barry Baseball Jax, Inc Juby Battle Stine Bauer Dahlberg Black Knight Financial Services Ben Boehm Pam Boettcher Abraham Borum, III Shannon Bowman Linda Britton Patricia Brock Ronnie Brock Shelly Broussard Robert Burrage C & C Insurance, Inc. Andrew Cappello, Sr. Mary Caudle Citigroup Tina Collins Karen Colteryahn ComForcare Senior Services Community Bank & Trust of Florida Community Bank of Florida Cone Distributing, Inc. Greg Consalvi Continental Motorcars, Inc. Virginia and Jack Corder John Costas Craftworks Foundation CRS Cattle Company LLC Tim Cummings Gary Dassatti Ken Donaldson DonateWell Ellen Downey Drake School of Irish Dance John Drott, III Bruce Dutton Margaret Evancho Fidelity Charitable Gift Fund David Fisher Michael Fraser Sanford Friedman Brian Fulwider Debra Fulwider Daniel Gamas Joan Gambro Gate River Run GFWC Plant City Junior Woman’s Club Patti Godwin Francine Gonopolsky Adela Gonzalez Maira Gonzalez Ernest Green Lewis Green, Jr. Ronald Grodsky William Groom Grow Financial Federal Credit Union

Gulfport Elementary PTA Harden & Associates Robin Hardin C Wayne Hayes HBO Latin America Employees HealthSouth Rehabilitation Hospital of Ocala Wayne Heard Martin Herbert Kent Hermes Marcell Hetenyi Highlands Aviation, Inc. David Hodges Christian Hoyer Robert Hytner Kathryn Ifert Imagine Nation Books Inis Cairde, Inc. Italian American Cultural Association of Century Village Jennifer Jackson Randy Jackson Tony James Jaxi Builders, Inc. Tod Jilg JW Services and Supply Inc. Kiwanis Club of Little Havana Kraft Foods Foundation Matching Gifts Program Mark Kroboth Eva Krutchik Thomas Kurinsky L.C. Dairy, Inc. L.D. Mullins Lumber Co. Annie Life Penny Little Harvey Mackler Heather Mann Douglas Mateyaschuk, II Sharon Maybrook Cliff McGlamry Pat McGuiness Ron Miller Mila Minic-Massey Joseline Montenegro Frank Munk Lori and Tom Murphy Susan Nastasi National Christian Foundation Warren Nelson Nelson Law Group Gunter Neumueller NuMotion Brittany Owens Frank Panellas Sued Parrish Wanita Patrick Mark Pernik Dr. Paula Pettavino

Phillies Charities, Inc. Phillies Florida, LLC Pirates Dinner Adventure Pride Mobility Products Corporation Prime Meridian Bank Respicare of South Florida Daniel Reznikov Carlos Ribbeck Carrie Ricotta Ride-Away Peggy Rivera Eli Rolfe Andy Rosen Ryder System Charitable Foundation, Inc. J Alexander Salameh Joseph Scech Schneider National Foundation, Inc. Lou Schwechheimer Victoria Scott Sam Shahidi Rebecca Sharkey Greg Shodis Maria Sidan Deborah Silver Larry Silver Rosanne Smith John Spillman William Streyffeler Eileen Sullivan Geraldine Sullivan Diane Sweetapple Leonard Talarico Tech Data Product Management Federico Tewes The Baco Che-Na-Wah Bazaar Foundation The Carmax Foundation The Home Depot Foundation The Walt Disney Company Foundation Toys R Us Wilbur Trafton Thomas Travis Triple G. Dairy Division Tonya Turner UBS Bonnie Urbano-Williames Al Uritis Michael Valdes Verizon Matching Gifts Program Nery Villar VITAS Healthcare

Wabasso Road Dairy, Inc. Walmart Foundation Thomas Watkins Sam Whitham Clay Woodson Lee Woodworth Xcel Energy Xerographic Digital Printing Elena Yaber YourCause Chevron Matching Employee Funds Michael Zaronias Nina Zuppa

GENERAL GIFTS Gifts of $250 or more, made between 5/1/15 - 10/31/15.

101 Mobility John Evans through Aerojet Rocketdyne Delivers Aetna Foundation, Inc. Frank Allen Robert and Sheila Ambrose James and Jeanette Anglin Atlas Leasing, Inc. Bank of America United Way Campaign William Bellack Stephen and Jennifer Blume through Copperhead Charities Kenneth Burdick Citizens Bank Foundation Velva Clark Coach Matching Gift Program Suzanne Weber through Community Foundation of Tampa Bay, Inc. Community Foundation of Tampa Bay, Inc. Community Health Charities of America Community Health Charities of Florida, Inc. Consulate Health Care at Lake Parker Copperhead Charities Custom Mobility Anthony DiMare Drymension Group, LLC Fidelity Brokerage Services LLC Florida Public Utilities Florida Telecommunications Relay, Inc.

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

27

Fort Lauderdale Collection Gables Engineering, Inc. James Gannon Merritt Gardner Peter Geiger Christopher Gibson John and Patti Gilliss James Norris through Give With Liberty Employee Donations Glenn Anderson Memorial Golf Tournament Dr. E.R. Griffin III Doris Homan Home Instead Senior Care HTK Holdings, Ltd. Mark Kelly Sarah Kerr Shirlee Levin Meadow Park Elementary Medco, Inc. Merchant Advantage Ingeborg Michaels Mile High United Way John Murphy Carol and Steven O'Day Daniel and Mara O'Day Paul Palmisano Randall Peeler Phi Delta Theta Florida Alpha Pine Tree Golf Club, Inc. Pride Mobility Products Corporation R82 Rays Baseball Foundation Rubin Obstgarten Family Foundation Schneider Electric North America Foundation Lisa Schweitzer George Sheffield Simplesa Nutrition Ellen Smith Dr. Suzan J Smith Space Coast Runners, Inc. Spanish River Community High School Doris Stitt The Compass Clinic The Martin Andersen-Gracia Andersen Foundation, Inc. The Miami Foundation Tobii Dynavox Truist Cory Chalack through Truist Brian Chappell through UBS United Way Miami United Way of Northeast Florida, Inc. United Way Suncoast Steven and Darlene Wagner

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HONOR GIFTS To honor a friend, loved one, special occasion or event.

Gifts made between 5/1/15 10/31/15.

In Honor of Margo Booher Margo Bennardo

In Honor of Randall Brian Carol Brady Janice and Randall Brian Janice Brian Kathy Herrick In Honor of Ronald Bacon Alan and Paulette Holsinger Linda and Thomas Bortle Roger and Jeanette Kassing Charles and Sandra Bowman Maurice and Vivian Kistler Lucille Boykins Charles and Cynthia McNiel Andrea Campos Phillip and Karen Paswater Michael and Fran Catlett Phyllis Polny James and Janet Cisewski Henry Ruter, Jr. Arthur and Eleanore Collins Shirley Cox and Michael Guadagnolo Susan Wendeln Karen Daniels In Honor of Brett Carpenter William and Carol Deloury Cynthia Snyder Delores Dennis Louis and Janet Diecidue In Honor of Seth Daley James and Melanie Dolan Guy Strempack Richard Douden Arthur and Pamela Fenn In Honor of David DeCurtis John and Carol Ferrin Erin DeCurtis Beverly Ghesquiere William and Sandra Gilbert In Honor of Dr. Bert DeVries R. Greer, Sr. John Keenan, Jr. Anne Gust John and Kimberley Hart Gloria Ingram Michael Klann Joan and Ronald Laiacona Laura Latus Robert and Donna Lensmeyer Lawrence and Debrajane Lentz Edna Maker David and Rosemarie Marchiselli Jeff and Mary Margenau John and Susan Merz William and Virgina Meyer Lynn Miller Kevin and Dana Moore Richard Price Peggy Rosenberry Carol Slezak Joyce Smith Marlene and Michael Stagliano Marshall and Eileen Stoltz Bernice Sullivan David and Mabel Tom Diane Tomczak Barbara Underwood Richard Wyatt George and Kathleen Wyman In Honor of Alan Bartlett Shirley Bartlett In Honor of Mark Bermudez Michele Vicente

In Honor of Beth Evans Aerojet Rocketdyne Delivers In Honor of Judy Fahey Arlene Sobol In Honor of Susan Ferson Robert Ferson Shelley Ferson In Honor of Bill Gardner Amanda Baird Pattie Baird Sean Baum Christine Blake Kirk Conrow Beverly Ford Echo Gardner Jim Gardner Peter Gardner William Gardner Don Grindle Loretta Hill Janet Hirst Knights of Columbus #4934 Liz Knowlton James Landau Don MacDougal Dorothy Magray William Mather James Moore

Joan Murty Daniel Paltjon Tracey Portigo Josie Quest Paul Roukey Patricia Ryan George Salyerds Dale Sioist Frank Sioist Dave Springer Dianne Stedman Nola Thompson Jeroen Van Zwol Lori Yi Tom Zebick In Honor of Debra Gaudet Adrienne Linnell In Honor of Donna Griffith Edward Reese In Honor of John Griffith Edward Reese In Honor of Jacqueline Hager Patricia McElroy Catherine Simpson In Honor of Sheryl Hart Michele Vicente In Honor of Hilde Heard Richard Montgomery

In Honor of James Milligan Dennis and Joan Alfson Anthony and Mary Barrett Michael and Linda Chrysler Edward and Mary Coleman Cranston Family Limited Partnership Charles and Kathi Cullinane Aleck and Sally Fetkavich Donald and Susan Flowers Linda and Richand Ford Dean Foster Marshall and Selma Haimes Marlene and James Himes John and Christine Hoffman Manny and Frann Korn Stephen and Mary Lapp Joseph and Elise Lev Sharon Lyman Dennis and Barbara Militello Michael and Lynn Moran Michael and Maxine Olson Had and Connie Oshry Richard and Shirley Potts Americo and Patricia Ronci Burt and Linda Salk Thomas Samson William and Regina Satterlee Michael and Katherine Warren Steven and Lillie Wheeler Joe and Nancy Wollschlager In Honor of Tom Murphy Teresa Cahill

In Honor of Joseph Nault Kay Barber Suzanne Daniels In Honor of Tom Reddy Eileen Archer-Gago In Honor of Joyce Rodenhouse Cynthia Snyder In Honor of Lorraine Schwab Amy Schwab In Honor of William Scott Ride-Away In Honor of Susan Shallbeter Nancy Johnson Paul and Donna Sanborn In Honor of David Slade Dr. Howard Roberts John and Freida Scott In Honor of Jane Teplitzky Rita Steinmetz In Honor of Jason Whitworth Elizabeth Ransom In Honor of Evan Yegelwel Bruce Yegelwel

In Honor of Carol Hermes Aaron Hill through Give With Liberty Donations In Honor of Jim Hewitt Lynn Zepp through The Benevity Community Impact Fund In Honor of Charles Jacoson Mr. Shipper Delray In Honor of Glen Kubiak Kiwanis Club of SouthShore Foundation In Honor of Carl Linder Gili Bekerman In Honor of Helen Margolin Irma Engel In Honor of Antone McCloskey Council of Catholic Women St. Augustine Parish

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

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IN MEMORY

We extend our sympathy and continued support to the families 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. Decedents from 5/1/15 - 10/31/15.

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Monserrate Acevedo Joan Albanese Audrey Alesio Susan Bailey Diane Batdorf James Bayer John Blankenberg

Herbert Dubovy William Elston Iyoko Eye Susan Ferguson Allan Flock Hazel Fritsche Carolyn Fuller

Claudine McCarthy Pamela McCormick Bettye McGlockton Demetrio Mediavilla James Milligan Virginia “Ginger” Montgomery Gilda Morales

Paul Bradarich Judith Brannon Sharon Bridges Robert Brinker Hannelore “Lori” Britcher Terry Brown Patrick Burke Clifford Carter John “Butch” Chapline Russell Childers Brett Cohen Gladys Conde Robert Cote Mary Craft Mary Davis Deborah DeBack-Wright Dr. Bert DeVries Alice Dolcimascolo Hope Doyley Jeffrey Dragin

James Geisler Veronica Gidi Thomas Godfrey Gwendolyn Green Leonard Green Mary Hawthorne Steven Hopkins Charles Hummer Lauriston “Lonny” Izalr Diana Joseph Matthew June Kathryn Keating Joseph Keidel Robert Kemper Richard Kersey Leslie Kirschner Carolyn Kotziers Todd Kumnick William Lauck Bernice Lavery Daphne LeMoine Doug Lesch Laurence Long David Luke Mary Lundberg Donna Majka Harvey Margolin Bob Marler Alfred Massimino

Jose Muniz Xiomara Pascual Jacklyn Patterson Mary Payne Ronald Perry Elsie Ponce Jeffery Powell Sudhakar Reddy Leslie Riddle Ric Rittenhouse Nancy Showerman Ralph Showerman Cynthia Smith Joan Smith Allen Soto Sharon Spisok Rita Spitzer Larry Steele Linda Swift Douglas Swords William Thompson Alicia Torrealba James “Charlie” Tullous Judith Turner Harry Verstandig Michael Weaver Imojean Whitley Robert Williams Dr. Grace Wolff

SPECIAL FUNDS These funds allow The ALS Association Florida Chapter to provide help and services in a variety of ways.

To set up a special fund in honor or memory of a friend or loved one, call Kim Hanna at 888-257-1717, ext. 105.

The Rick & Sherry Murray Medical Futures Scholarship Fund Providing scholarships for medical and related programs for spouses, children and grandchildren touched by ALS.

The David C. G. Kerr Fund Providing funds to fight ALS in the area of greatest need.

The Evan J. Yegelwel Fund at The ALS Association Florida Chapter Providing funds to fight ALS on all fronts-awareness, patient care, advocacy, and research.

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

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

The Scott A. Mackler, MD, PhD Assistive Technology Program Enhancing the quality of life for people living with ALS by providing assistive technology devices.

The Todd Kumnick Freedom Fund Improving the lives of people living with ALS through the legacy of equipment to those in need.

PROMISE FUNDS Promising to help create a tomorrow without ALS.

The William Jay Armstrong Promise Fund The Dr. Pablo A. Suarez ALS Promise Fund

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 Rebecca Huffer

Nelson E. LeBarron Judith Jones Moore 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

Italicized names reflect members who are deceased. For more information about The Legacy Society, contact Kim Hanna at: 888-257-1717, ext. 105 or Khanna@alsafl.org.

31

THE ALS ASSOCIATION

Florida Chapter

NONPROFIT ORG U.S. POSTAGE

PAID

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

Save The Date!

2016 Walk to Defeat ALS速 Greater Tampa Bay - March 5, 2016 Central Florida - March 12, 2016 Broward - March 19, 2016 Sarasota - March 19, 2016 Jacksonville - April 2, 2016 Ocala - April 2, 2016 Palm Beach - April 16, 2016 Miami-Dade - September 24, 2016 Ft. Myers - November 5, 2016 Tallahassee - TBD

Register today at: www.WalktoDefeatALS.org

2016 Miami Panthers ALS Awareness Game Miami Panthers vs. Winnipeg Jets Saturday, February 20, 2016 @ 7:00pm

2016 Tampa Bay Rays ALS Awareness Game

TAMPA, FL Permit No 2910

ALS Resource Support Groups Join us at an upcoming resource support group to find practical advice on day-to-day living with ALS and a safe place to express your concerns. Everyone is welcome.

North Florida

Pinellas

Jacksonville South Florida Daytona Miami-Dade Spanish Group Panhandle/Tallahassee Miami-Dade English Group Phone Group Martin Central Florida Palm Beach Orlando Broward Brevard Sarasota-Bradenton The Villages Northport Hernando Ft. Myers Tampa Visit www.ALSAFL.org or call us at 1-888-257-1717, ext. 113, for resource support group dates and locations.

Connect with us online:

Tampa Bay Rays vs. New York Yankees Sunday, July 31, 2016 @ 1:10pm

Design and content by Julie Niehoff; Chief Editor: Gabby Harrison