State Budget Cuts Threaten the Futures of ALS Clinics in Florida
The Florida Legislature has again cut funding in half this year for the Bitner Plante ALS Clinic Initiative of Florida, providing just $250,000 to ALS clinics around the state that provide patients with comprehensive ALS care. The Bitner Plante ALS Clinic Initiative is funded by The State of Florida Department of Health and this dramatic cut puts ALS clinics in jeopardy of the ability to provide the critical care needed by people living with ALS in Florida.
What started out as $1M in original funding in 2013, the Bitner Plante ALS Clinic Initiative provided the necessary resources to expand the services of Florida clinics offering the highest level of comprehensive multidisciplinary ALS care, allowing some clinics to double the number of patients seen. Continued support enables clinics to maintain this crucial service. Since 2013, the state has dramatically decreased its engagement with the ALS community, dropping funds to $500,000 for 2016 and 2017, and dropping yet again in 2018 to just $250,000.
"The ALS clinics are very labor intensive. We count on the additional revenue to support the extra clinic days and may be in jeopardy of having to eliminate the extra clinic days given the drop in funding," said Dr. Michael Pulley, Director of the UF Health Jacksonville Multidisciplinary ALS Center. "In our case, the extra funding allowed the addition of an afternoon clinic which we have used for patients who live farther away, making morning clinics very difficult."
With more than 1,600 people living with ALS in Florida alone, there is a critical need to not only maintain, but increase the current capacity of Florida's ALS multidisciplinary clinics to provide care to more patients. Even though ALS is still currently incurable, studies show that patients who attend an ALS multidisciplinary clinic experience an improved quality of life and extend life by almost a year, sometimes longer.
"At least for us, I think there is a real RISK that we will need to reduce services - either clinic days or spectrum of specialists available," says Dr. Michael Benatar, Director of the University of Miami Kessenich Family ALS Center of Excellence. "I agree with what Michael said. Also, we use the funding to pay for services not reimbursable by third party payers (dietitian, orders and care organization done in between clinic)," said Dr. Tuan Vu, Director of the ALS Center of Excellence at USF. "We also use the funding to provide care to patients who have no insurance coverage."
People living with ALS in Florida need your help. Continuation of the Bitner Plante ALS Clinic Initiative funding is critical for people living with Lou Gehrig’s Disease in Florida. Financial support of our ALS multidisciplinary centers is essential to the future of critical care needed by people living with ALS in our state.
CLICK HERE TO LEARN HOW YOU CAN HELP TODAY!
Join us for a day of informative demonstration and sessions for people living with ALS, caregivers, healthcare professionals, and supporters of the ALS community. This unique event has something for everyone including numerous distinguished keynote speakers, a hands-on equipment "learning lab," a vendor fair, plenty of opportunities to "Ask the Experts," and a luncheon featuring guest speaker Richard S. Bedlack Jr., MD, PhD, MS, Neurologist from Duke Health.
Our Symposium is FREE to people living with ALS accompanied by one caregiver. Additional General Admission tickets are available for $35.
We hope to see you at our new location this year!
The ALS Association Florida Chapter's Fifth Annual
Hope and Help Symposium
Rosen Shingle Creek
9939 Universal Blvd. | Orlando, Florida 32819
Saturday, September 22, 2018 | 8:00AM - 5:00PM
Questions? Please call us at 888.257.1717, email email@example.com, or visit ALSHopeandHelp.org.
PatientsLikeMe is world’s largest personalized health network helping 11,000+ ALS members discover new treatments, connect with others & take action to improve their outcomes. We’re embarking on a new approach to science that leverages the most advanced scientific resources available to learn more about the nature of disease. Learn more at www.PatientsLikeMe.com/join/ALSFL
REGISTER TODAY FOR FOR A FALL WALK TO DEFEAT ALS® NEAR YOU!
Get your teammates together and grab your gear, it’s time for all of you All-Stars to get your game on! Please join us at one our statewide Walk to Defeat ALS events this spring! Form a team, invite your family, friends, co-workers, and help The ALS Association Florida Chapter fight Lou Gehrig’s Disease. Register Today!
Miami-Dade - October 27th - Miami, FL
Tallahassee - October 20th - Tallahassee, FL
Ancient City - November 3rd - St. Augustine, FL
Start a team or sign up as an individual today!
CLICK HERE to register for a walk near you today!
For more information, call 888.257.1717 or email us at firstname.lastname@example.org.
Share your experience with us on social media this year using #WalktoDefeatALS
Tag us on Facebook, Twitter or Instagram @ALSFlorida
Test your strength. Push your limits. FIGHT ALS.
Grab your friends and join us for this unique opportunity to be a part of Team Challenge ALS
and let's #ChallengeALS at the highest level!
Ride. Run. Roll to Defeat ALS
Saturday, December 1, 2018
Crews Lake Wilderness Park, Spring Hill, FL
The Ride. Run. Roll to Defeat ALS is a one-day endurance event designed to appeal to every level of rider and 5k runners too! We offer the Metric Century ride (approx. 62 miles), a 25 mile ride, and a 5K Run/Walk or Roll. You'll experience all of the beautiful scenery and challenging terrain Crews Lake Wilderness Park has to offer!
Every participant can count on support from start to finish with rest stops, SAG vehicles, and the safety team. Upon completing the tour, riders and runners are welcomed back by cheering crowds and finish line festivities that include entertainment, complimentary massages, and a healthy lunch.
Help Put the Brakes on ALS and Sign Up Today!
Questions? Please contact Kate Sanstrom, Regional Development Manager, at 888.257.1717 ext. 115 or email email@example.com.
Hope Loves Company's Camp HLC is
Coming to Florida Again this Year!
The Florida Chapter is excited to sponsor Hope Loves Company, Inc. to help bring Camp HLC to Florida again this year! Hope Loves Company is a non profit organization with the mission of providing both educational and emotional support to children and young adults, ages 6 - 21, who have or had a loved one battling ALS. It is an opportunity to have fun, to be challenged through team building exercises, and to meet other children who are in the same situation.
The camp is free to attendees thanks to supporters like The ALS Association.
Circle F Dude Ranch Camp
September 16 - 18, 2018
5301 Dude Ranch Road
Lake Wales, FL 33853
Questions? For more information, contact
Hope Loves Company 609.730.1144
or email firstname.lastname@example.org.
Are You Prepared for this Year's Hurricane Season?
The 2018 hurricane season officially started on June 1st and being prepared is. Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. We recognize how important it is that people living with ALS and their family members have the resources they need to make plans to protect themselves in the event of a disaster. We've assembled numerous resources to help you and your family plan and prepare for this hurricane season.
Make the conscious decision to be prepared. It takes work, but it is worth it! The more you do, the more confident you will be that you can protect yourself when the time comes. Make a plan.
Did You Know You Can Donate Equipment
to the Florida Chapter?
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.
CLICK HERE for more information about the types of equipment we are able to accept.
For equipment donations please contact our Care Services Department at 888-257-1717, ext. 118
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.
Ability Medical Supply and NuMotion are the Official Equipment Loan Program Partners of The ALS Association Florida Chapter. They can assist you with all of your equipment needs.
The National ALS Registry and The National Biorepository Program:
One Man's Perspective Living With ALS
My Experience With ALS (So Far)
Written By: Bill King