Ice Bucket Challenge Progress

 

Chapter Highlights

Clinic Seasonal Web

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.

Leigh and Vu 2018"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!


 

 

2017 HHS Photo

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

Register Today Button 

Questions?  Please call us at 888.257.1717, email info@alsafl.org, or visit ALSHopeandHelp.org.


Presented by:

PatientsLikeMe_Resized.jpg

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

 


 

Team Judy

 

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 walk@alsafl.org.

 

Share your experience with us on social media this year using #WalktoDefeatALS

Tag us on Facebook, Twitter or Instagram @ALSFlorida


Ride Greeting Hero 2018

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!

Register Today Button

Questions? Please contact Kate Sanstrom, Regional Development Manager, at 888.257.1717 ext. 115 or email ksanstrom@alsafl.org.


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


Register Today Button

 

Questions?  For more information, contact
Hope Loves Company 609.730.1144
or email jodi.odonnell-ames@hopelovescompany.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 Support The Florida Chapter Every Time You Shop on Amazon?


That's right!  The ALS Association Florida Chapter is a part of the AmazonSmile network.  It's easy.  AmazonSmile is a website operated by Amazon that lets customers enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organizations selected by customers.  It's that simple!  And it's not just during the holidays, it's ALL YEAR LONG!


The next time you shop on Amazon.com, use the link below and the AmazonSmile Foundation will donate to 
The ALS Association Florida Chapter!

Durable Medical Equipment

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.   

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. 

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.     

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.“

Ability Logo HHS Numotion Logo

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


Bill King

 

After being seasonal Florida residents for over a decade, in December 2016 my wife, Rhonda, and I became full-time residents. I continued to work, which involved traveling back to Connecticut one week per month.

In the late spring of 2017, I noticed that my speech wasn’t as crisp as it had been, with some slurring of words. I also was having difficulty swallowing and chewing (it was taking me twice as long to eat lunch as my work colleagues).

Over the next few months, Rhonda and I visited several different medical specialists in search of an answer. We also spent hours with “Dr. Google.” Finally, we made an appointment at the Mayo Clinic in Jacksonville to meet with a rheumatologist and a neurologist. On October 31 (Halloween), I was given the diagnosis of bulbar onset ALS. Life hasn’t been the same since. However, the outpouring of support from friends and relatives has been unbelievable. That support has been critical to allow Rhonda and me to have some semblance of normalcy in our lives. I’m fortunate to still be able to walk (even play a little golf) even though I don’t have the energy and stamina I used to. My diet has changed to mostly soft foods since chewing is difficult. The biggest change has been my voice, as my speech is now largely unintelligible.

The Mayo neurologist mentioned that there was an ALS clinic in Fort Myers, so that was our first stop when we arrived back home. The friendliness and support of the people we met at the Lee Health ALS Clinic – without an appointment – was wonderful.
 
Unfortunately, it is unlikely that a cure for ALS will be discovered in time to help me. But, it seemed that there might be some ways I could provide some hope to future generations. I signed up at the National ALS Registry and completed their risk factor questionnaire. I also looked into clinical trails involving stem cell research. But I did not meet the qualifications for any because of restrictions on age, medications, or they were too far from home. 

In January 2018, I was contacted by the National ALS Biorepository. This organization was reaching out to people who had enrolled in the National ALS Registry. They were looking for volunteers to submit blood and urine samples which would be used for future research on ALS. I agreed, and am happy I did. The entire process was simple and required no effort on my part. We set a time for a medical professional to come to my house to collect the samples. The organization was very flexible, agreeing to re-schedule when a conflict arose in my schedule. The in-home visit took 15 minutes as the technician drew 5 vials of blood and collected my first urine of the morning.
Based on my experience, I would encourage anyone who is physically able to participate in the National Biorepository Program if you are contacted, or reach out to your local ALS chapter to find out if they can help you participate. Additionally, we should keep an eye open for clinical trials that might help find a cure for this disease.


The Florida Chapter would like to thank Bill and his wife Rhonda for sharing their story with us.



 

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