Florida Budget Includes Critical Funding for ALS Patients
TALLAHASSEE, Fla. – June 30, 2020– Gov. Ron DeSantis approved $800,000 in funding for the Bitner Plante ALS Initiative of Florida in the 2020-2021 budget released yesterday. The Initiative provides support for ALS patients seeking treatment at the multidisciplinary clinics located at Mayo Clinic, Jacksonville; University of South Florida, Tampa; University of Miami, Miami; and UF Health Jacksonville.
“We recognize that the Governor was faced with impossible decisions this year and appreciate greatly his commitment to ALS patients,” said Ray Carson, president and CEO of The ALS Association Florida Chapter. “His support of the Bitner Plante Initaitive demonstrates how critically important the program is to hundreds of Floridians impacted by ALS.
“Rep. Travis Cummings, Sen. Aaron Bean, Rep. Holly Raschein, Rep. MaryLynn Magar and Sen. Rob Bradley advocated for the Bitner Plante Initiative throughout the legislative session,” said Carson. “Their leadership and support means so much to the ALS community.”
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal neurodegenerative disorder affecting motor neurons, characterized by paralysis and death typically within two to five years from the time of diagnosis. Victims gradually lose the ability to walk, talk, eat, and eventually breathe.
At an ALS multidisciplinary clinic, patients receive comprehensive care from a team of specialists at one location and on a single day. The team includes a neurologist, social worker, occupational therapist, speech therapist, respiratory therapist, physical therapist, registered dietitian, psychologist/psychiatrist and palliative care expert. Multidisciplinary clinics coordinate care and interface with the primary care physician, local neurologist, and community-based services.
ABOUT THE ALS ASSOCIATION FLORIDA CHAPTER
Since 1987, The ALS Association Florida Chapter has been “covering all the bases for people living with ALS in Florida." The Chapter provides patient programs, advocates on behalf of patients with our government leaders, creates awareness of the disease, and funds research. In addition, the organization provides support to our statewide multidisciplinary ALS clinics and research facilities, enabling them to increase patient care. For more information, visit us on our website at www.alsafl.org or on Facebook, Twitter or Instagram @ALSFlorida.
ALS IN THIS TOGETHER - A Look at Improvements Made on The ALS Association Florida Chapter Programs and Services Amidst the Pandemic
Written by Jessica Collins, Care Services Director
COVID-19 has created uncharted waters for many in the healthcare field here in Florida. Despite this, The ALS Association Florida Chapter’s mission has not been altered. We remain focused on discovering treatments and a cure for ALS, while serving, advocating for, and empowering people affected by ALS to live their lives to the fullest.
March 16, 2020, marked my first day as Director of Care Services with the Chapter, as I stepped into my role right in the midst of the crisis, I did not feel anxious, scared, or intimidated. It was the opposite, I felt a need to act fast, a need to fight and to protect the community of those we serve. There was not a sense of panic because I know we have a strong team to continue to lead the fight for ALS and now COVID-19.
Although COVID-19 has altered some of the ways our Care Services Department delivers the Chapter's programs it has not halted them. It remains a priority for the Florida Chapter to safely deliver our programs and services and meet the needs of the ALS Community in ways that accommodate the surrounding circumstances of this pandemic.
As a result, virtual support group meetings have replaced in-person support group meetings; our visiting volunteers’ program has been modified to a phone friends’ program; and, our annual Hope and Help Symposium will be presented on a virtual platform this year. I have told myself, if there is a silver lining anywhere during this crisis, it is that we are fortunate enough to live in a time where technology has evolved immensely and allows us to stay connected and informed virtually. Ultimately growing our reach and connection across the state!
During a time where the world has been advised to slow down, stay home, and follow strict guidelines, we recognize that ALS has not slowed down. The Chapter continues to team up with some of the best ALS physicians and clinics in the country and are excited to be participating in ALS telemedicine clinic visits. Telehealth visits continue to provide specialized care that is so important in managing this diagnosis.
Financial Assistance Programs remain in place on a quarterly basis and, while non-urgent requests from our Equipment Loan Program have been suspended, we continue to respond to urgent requests if we can identify safe options for accommodation.
When I started in healthcare 15+ years ago it was my personal mission to ensure the delivery of quality services and resources to help those in need to continue to live a quality of life. This is exactly what we do at The ALS Association Florida Chapter and we will not let COVID-19 stop us. I encourage you to reach out to our Chapter with any questions regarding your diagnosis and or our programs and services. You are not alone, we are ALS IN THIS TOGETHER!
“You Find an Inner Strength that You Never Knew You Had.”: Troy Fields on Living With ALS
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
“I was just kind of going about my business, taking care of my family,” he said. “And one day, you try to button your shirt or tie your tie, and you can’t quite get the strength to put the button through the hole, and you kind of realize at that point there’s a problem.” After months of doctor appointments and lots of tests, it was confirmed he had ALS.
Troy was very candid about the difficulty and frustration around the diagnosis process but recognizes the challenges doctors face when confirming an ALS diagnosis. After ruling out other conditions that could be causing his symptoms, he was given the news he was already anticipating. “I kind of appreciated the bluntness because we had gone through six months of, ‘Let’s eliminate this, let’s eliminate that.’ And so, to at least finally have something definitive was good,” he said.
“The harder side is on the personal side, that’s really the ‘what’s next?’ That’s the one that effectively opens up your chest, takes your heart out, stomps on it a little bit,” he said. “My wife was with me during those appointments. I am sure that, to her, it was just as much of a death sentence, as it was for me. She felt it the same way that I did, and so, when the diagnosis happens, it doesn’t just hit you. It hits all the people around you.”
He says that fighting ALS has helped him find a strength he didn’t recognize before. “I’m a strong-willed person, but not necessarily a strong person in many respects, but you find that you have to be and find that when you need it, you have that boost, you have that strength and you have to be.”
Troy was forced to retire from the job he loved and found he suddenly had a lot of time on his hands. He was never the type to just sit around and knew he wanted to do something meaningful with his time. He reached out to The ALS Association Florida Chapter and joined their volunteer Board of Directors. “So, how do I fill the time? What am I going to do?” he asked himself. “That’s actually one of the reasons I decided to join the Board of Directors of the Florida chapter, so that I could do something and feel that I’m being something; so, I felt challenged personally to take some action, maybe not because I’m going to get the benefit of it.”
Troy is very active with the Florida chapter, participating in both state and national advocacy. He also participates in the Walk to Defeat ALS® and local support groups where he shares his story often. “It’s amazing to see when you get out there in a support group and people are sharing their story and they’re sharing their situation,” he said. “The inspiration that you get from hearing the stories and seeing people, alluding back to what I was talking about being an example, it’s inspirational. So, get out there, go to that support group. Yeah, your family and friends definitely have to be there. But extend that circle out.”
When asked what Troy would share with someone who was recently diagnosed, he said “That it gets better and it seems ironic and contradictory to say on a terminal disease it gets better, but it does. It does because you find an inner strength that perhaps you never knew you had because perhaps you were never challenged and pushed.”
Troy went on to say, “Get involved, help other patients, spread the word, become an advocate. That also actually provides you strength because there’s no doubt that when you see other people that are further along than you are and you see them out and about, you can’t help not getting that energy and getting that, that spirit from them and saying, ‘If they can, I can.’”
He also stressed the importance of continuing to find joy every day.
“Tomorrow is not guaranteed for anybody. I may have an ALS diagnosis, but I could get hit by a truck tomorrow and so it’s at the end of the day, that perspective has not changed. I still have today, I got to make the best out of today.”
Appreciating Volunteerism Surrounding Our Chapter
Message from Ray Carson to Our Volunteers for National Volunteer Month
"I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do." - Helen Keller
For the past several weeks, we have all been living through a challenging time. If you are like me, you seek comfort in the familiar to get yourself through times like this. And for an organization like the Florida Chapter, that comfort comes from our growing network of volunteers and supporters across the state.
This year, National Volunteer Week falls at the ideal time. As we all work to get through this current crisis, it’s important that we take time to celebrate and thank the volunteers and supporters who make our work possible. We have board members, event participants, program volunteers and other supporters who contribute their time, energy and talent each day.
Back in November, I pulled into the parking lot at Ripley’s Believe It Or Not Museum in St. Augustine at about 6 a.m. on a rainy Saturday morning to get ready for our Walk to Defeat ALS. Despite the early hour, I arrived to find Alecia and Mark Bailey as well as dozens of others already on site preparing for hundreds of participants who would be arriving a few hours later. Events like this would not be possible if not for people selflessly dedicated to moving forward our mission.
And, my experience in St. Augustine was not unique. I have seen similar commitment from volunteers in Miami, Broward, Jacksonville, Tampa, Orlando, Tallahassee, Fort Myers and so many other locations around Florida. We depend on volunteers to help deliver our services, make our fundraising events possible and educate legislators in Tallahassee and Washington DC about issues that are critical to those affected by ALS.
Whether you have given us an hour of your time or hundreds of hours this past year, I want to say thank you for making the ALS mission a priority. Your commitment helps ensure that nobody who is impacted by this disease has to be alone.
Ray Carson President/CEO
"What a Ride It Has Been!" - Letter from Ray Carson Celebrating One Year on April 8, 2020
Florida ALS Community:
One year ago, I joined The ALS Association Florida Chapter as its new President and CEO. It’s hard to believe time has gone by so fast - but what a ride it has been! As excited as I was to come to The ALS Association, I find myself even more enthusiastic as I consider our prospects for the future.
I have traveled thousands of miles over the past 12 months and want to thank so many of you for taking time to talk with me. I’ve learned what we are doing well, where we can improve and the many challenges that still exist. Those conversations helped shape and sharpen my vision for the organization. We’ve assembled a team of professionals that is committed to doing everything we can to meet the growing needs in this state.
Earlier this month, we announced that the Phil Smith Neuroscience Institute at Holy Cross Hospital in Ft. Lauderdale was named the state’s newest Certified Center of Excellence. They are the 5th Certified Center in Florida, joining the teams at the University of Miami, Mayo Clinic, UF Health Jacksonville and University of South Florida. The Florida Chapter also is actively partnering or in discussions with the ALS clinics at Lee Health, Orlando Health, Sarasota Memorial Hospital and University of Florida in Gainesville. All of these relationships enhance the care available to those affected by ALS around the state.
Back in September, I was fortunate to bring a delegation of Florida Chapter volunteers to Tallahassee to meet with Rep. Travis Cummings, Rep. MaryLynn Magar, Sen. Aaron Bean and several other members of the Florida legislature. We talked about the key role that the state of Florida needs to play to ensure those living with ALS have access to multidisciplinary care. Thanks in large part to these legislative champions, the House & Senate submitted a budget to the Governor that includes an $800,000 appropriation for the Bitner Plante ALS Initiative. This represented a significant increase over the previous year and will serve as a lifeline for the 1,500+ families who are affected by ALS.
Our path forward in the wake of the COVID-19 crisis is not certain. Like most organizations, we need to identify new ways to support and interact with our community. But, this country has always proven to be strongest during times of great challenge. And I believe there is simply no obstacle we can’t overcome together.
Thank you for your support during my first year with The ALS Association Florida Chapter and for your continuing commitment to our mission.