ALS Ice Bucket Challenge Progress

 

Chapter Highlights

 

Rays Header 2019

Tickets Are Now On Sale for Our 2019 ALS Awareness Game

With the Tampa Bay Rays!  Get Yours Before They're Gone!

 Please join us for a fun-filled, family day with the Rays to help spread awareness of ALS!  Watch as our Tampa Bay Rays take on the New York Yankees at Tropicana Field.  Your ticket purchase includes an ALS Awareness t-shirt for the event, and the afternoon offers plenty of options including a pregame lunch buffet with ballpark fare while you watch all of the activities on the field!  

And every Sunday home game is Family Fun Day where kids can enjoy pregame entertainers and postgame fun including face painters, balloon artists, DIY crafts in Raymond's Treehouse, live music and jugglers.  And after the game children under 14 can run the bases and participate in DJ Kitty's Dance Party!

Join us at "the Trop" and help us strike out Lou Gehrig's Disease!

Tampa Bay Rays vs. New York Yankees

                     Tropicana Field, St. Petersburg, FL                     

                    Sunday, May 12, 2019             

 1:10PM 

 Suites will also be available on a first-come-first-served basis.  If you are interested in purchasing a suite for the game,

please contact Patti Palmer at (813) 205-5566.


AND there's a BONUS GIVEAWAY on May 12th from the Rays: Snapback Hat Presented By FOX Sports Sun for Fans 14 and under while supplies last so make sure you get to the park early!

Rays Snapback Hat 2019


Buy Tickets Now

 

QUESTIONS?  Contact Julie Niehoff: jniehoff@alsafl.org or call 888.257.1717 ext. 120 

 


 

Ray Carson Appointed New President and CEO of

The ALS Association Florida Chapter

Please join us in welcoming Ray Carson as our new President and CEO here at the Florida Chapter! 

Ray Carson Bio 2019Ray Carson most recently served as Director of Media Advocacy for the American Cancer Society Cancer Action Network (ACS CAN).  In that role, he served as lead communications counsel in 24 states, the District of Columbia and Puerto Rico, leading a team of four media advocacy professionals promoting the organization’s local, state, and federal priorities in the region. 

Carson joined ACS CAN after a 14-year career with the American Cancer Society where he served in a variety of executive leadership positions in the Florida Division, including Chief Operating Officer, Senior Vice President for Support Services and Vice President of Communications and Marketing.  Carson also served two years as Regional Director of Human Resources covering 14 states, the District of Columbia, and Puerto Rico.

“We are very excited to bring Ray onboard at the Florida Chapter,” said John Cannistra, chairman of the board.  “Ray’s vast experience with the American Cancer Society gives him the knowledge and confidence to lead this team, to make a positive impact on the ALS community, and ultimately to advance the work to find a treatment and cure."

Ray comes to us with vast non-profit experience, and we are excited to have the addition of his leadership and look forward to the positive impact he will bring to the ALS community in Florida!

You can learn more about Ray and his background on our website: http://bit.ly/CEORJC

 


 

2019 Advocacy Conference

 

2019 National ALS Advocacy Conference

June 9 - 11, 2019

Every year, hundreds of ALS Advocates go to Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and gain legislative victories. This is our opportunity to share the ALS story and let members of Congress know why the time to act is now!

The 2019 National ALS Advocacy Conference is an opportunity for the entire ALS community to unite in Washington, DC. This year’s conference will be held June 9 - 11, 2019. After a day and a half of meetings and training sessions, ALS Advocates from across the country will go to Capitol Hill to advocate with their Senators and Representatives.

Conference and hotel registration is now open.

For More Information or to Join the Delegation From Florida, Contact

Patti Stanco: 888.257.1717 ext. 120 or email pstanco@alsafl.org

 


Walk Landing Page Hero 2019

Our Spring Walk Events May Be a Wrap,

But Fall is Right Around the Corner!

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!

TALLAHASSEE | Cascades Park | Tallahassee, FL | Saturday, October 19, 2019 - PARTICIPATE TODAY!

MIAMI-DADE | Maurice Ferre’ Park | Miami, FL | Saturday, October 26, 2019 - PARTICIPATE TODAY!

ST. AUGUSTINE | Ripley's Believe It Or Not | St. Augustine, FL | Saturday, November 9, 2019 - PARTICIPATE TODAY!

 

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

 


 

 

2017 HHS Photo

SAVE THE DATE!  SAVE THE DATE!  SAVE 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!


 

Ride Greeting Hero 2018

 

2019 RIDE RUN ROLL to Defeat ALS

DETAILS COMING SOON!

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.


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.


 

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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