Ice Bucket Challenge Progress

 

Chapter Highlights

Walk High Five

REGISTER TODAY FOR A WALK TO DEFEAT ALS®  NEAR YOU!

The ALS Association’s premier event, our Walk to Defeat ALS® is an outlet for communities across the nation to demonstrate their concern for and the urgent need to find the cure for ALS while providing the best care for those who are currently battling the disease.

What began more than 15 years ago as a grassroots effort to increase awareness has now turned into a National Signature Event that the entire ALS community rallies behind, growing the number of teams and participants each year.

Whether reinvigorated by the Ice Bucket Challenge 2014 or new and concerned about our cause, over 150,000 ALS supporters nationwide participated in local Walks this year. It was incredible to feel your support, as Walks across the country broke fundraising and attendance records, and enthusiasm was off the charts! 

 

Help us keep the momentum going in 2019!

Southwest Florida - February 23, 2019 - Ft. Myers, FL 

Sarasota - March 2, 2019 - Sarasota, FL

Greater Tampa Bay - March 9, 2019 - St. Petersburg, FL 

Palm Beach County - March 16, 2019 - West Palm Beach, FL 

Central Florida - March 23, 2019 - Orlando, FL

Jacksonville - March 30, 2019 - Jacksonville, FL

Broward County - April 6, 2019 - Davie, 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


UF Health Ceremony

Congratulations to the Team at UF Jacksonville Multidisciplinary ALS Center!

The ALS Association, along with The Florida Chapter, welcomed UF Jacksonville Multidisciplinary ALS Center to the nonprofit organization’s Certified Treatment Center of Excellence Program, establishing the ALS Center as meeting the highest levels of established national standards of care in the management of Amyotrophic Lateral Sclerosis (ALS). 

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is currently no cure and no life-prolonging treatments for the disease.  

Since 1998, The ALS Association’s national network of Certified Treatment Centers of Excellence has provided evidence-based, multidisciplinary ALS care and services in a supportive atmosphere with an emphasis on hope and quality of life. Each ALS clinic must meet The ALS Association’s clinical care and treatment standards, which are based on the American Academy of Neurology (AAN) Practice Parameters, participate in ALS-related research and successfully complete a comprehensive site review to be certified as a Center of Excellence. Achieving certification through successful completion of the program’s robust clinical and administrative reviews confirms to people living with ALS and their family members the validity and comprehensiveness of the Certified Treatment Center of Excellence’s standards of quality and implementation of best practices. 

“The care that people receive here is a model for other parts of the country and I’m proud that we are able to recognize UF Jacksonville for its outstanding multidisciplinary approach to treating people with this devastating disease,” said Gabby Harrison, Director of Programs and Operations for the Florida Chapter.

Research has shown that multidisciplinary care, or, the practice of having physicians and other healthcare professionals collaborate to provide the most comprehensive treatment plan for patients, helps people with ALS have better quality of life - and actually prolongs life in most cases.  The Florida Chapter has a long history supporting multidisciplinary care, providing staff liaison and financial support to ensure people living with ALS receive the specialized care necessary to meet their unique needs.

“The UF Health Jacksonville Multidisciplinary ALS Center is proud to be recognized as a Certified Center of Excellence by the ALS Association,” said Medical Director, Dr. Michael Pulley. “This accomplishment is the culmination of years of hard work and dedication by an outstanding team of care providers.  Patients of the UF Health Multidisciplinary ALS Center will benefit from this recognition as we strive to improve and take our Center to an even higher level.”

For more information about ALS multidisciplinary care in Florida, CLICK HERE.


Rays Header 2019

SAVE THE DATE!  SAVE THE DATE!  SAVE THE DATE!  SAVE THE DATE!

 

2019 ALS Awareness Game with the Tampa Bay Rays

Tampa Bay Rays vs. New York Yankees

Sunday, May 12, 2019

1:10PM

TICKETS ON SALE SOON!  Visit alsafl.org for more information

or follow us on Facebook @ALSFlorida

 


 

2017 HHS Photo

SAVE THE DATE!  SAVE THE DATE!  SSAVE THE DATE!  SAVE THE DATE!

2019 HOPE and HELP Symposium

Saturday, September 14, 2019

Rosen Shingle Creek | Orlando, FL

We will soon be sharing updates about REGISTRATION so please continue to check back

or follow us on Facebook at @ALSFlorida!

 


Amazon Smile holiday teaser

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!  


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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