Ice Bucket Challenge Progress

 

Chapter Highlights

Rory and Dawn at Ride

RIDE RUN ROLL To Defeat ALS Aims to Put the Brakes on Lou Gehrig's Disease

The Florida Chapter kicked off its 9th Annual RIDE RUN ROLL to Defeat ALS on Saturday, December 1st, a one-day endurance event for cyclists and runners to join the fight to find a cure for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease. 

This year Rory Shrum, his sister Dawn, along with friends on Team 3G CFAC (3rd Generation Crankin’ for a Cure) participated in the 25 mile ride, finishing first with Dawn at the front of the pack!  Rory was recently diagnosed with bulbar onset ALS and is the 3rd generation in his family to be affected by the disease.  "Our family history started with our great aunt, her brother (our grandfather), our mother, her sister and then our cousin (great aunt's daughter).  Together we're riding to make a difference in the lives of those affected by Lou Gehrig’s Disease.  Our team is committed to raising money to support people in the community with ALS and spread awareness of the urgency to find treatment and a cure," said Rory.

Rory traveled all the way from Texas to participate in the event with his sister who lives here locally in Florida.  “I’m still healthy everywhere but my tongue, vocal chords, and now a little effect on my lungs, so I was still running 3-5 miles 2-3 days/week after my diagnosis in March,” said Rory.  “I’m still fairly new to cycling but the love for working out and the outdoors is why I do it.  We care about my journey dealing with ALS and all the others affected and how The ALS Association helps greatly and in so many ways.”  His Ride team to date has raised more than $6,000 to fight ALS. 

“Events like these are great opportunities to help spread awareness and raise the funds we need to continue our mission: to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest,” says Julie Niehoff, Director of Communications and Marketing at the Florida Chapter.  “It was a fantastic day designed to honor and support all who have and continue to bravely fight Lou Gehrig's Disease.”  

The RIDE RUN ROLL to Defeat ALS, is a fundraising community event that creates the hope and action needed to conquer Lou Gehrig's Disease.  Riders may choose from two cycling routes - the Metric Century (62 miles) and the 25-mile route along with a 5K for runners and those who might want to get out and walk.  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. 

 For more information about this event or other opportunities to get involved, visit alsafl.org.


 

 

Walk High Five

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

The Walk to Defeat ALS® is the #1 way to empower yourself to lend support to those fighting and caring for someone living with ALS. Every year, thousands of people across the state come together to raise funds to support care service programs, enable cutting-edge research, and advance nationwide advocacy efforts for people with ALS and their families.

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 Jacksonville

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.“We are delighted to have met the criteria for becoming a Certified Treatment Center of Excellence,” said Medical Director, Dr. Michael Pulley, “and are thankful for continued support from the Florida Chapter in helping provide the very best care for patients here in Jacksonville.”

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


 

 

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

2018 Hope and Help Symposium Presentations are live on the Website!

If you were unable to attend last month's Hope and Help Symposium in Orlando,

here are the presentations for the day we have permission to share:

ALS Research Progress: Moving Toward Effective Treatments and a Cure

Jill Yersak, Director, Mission Strategy, The ALS Association

Advocacy: Policy Priorities & the Power of Sharing Your Story

Patti Stanco, Regional Program Manager and Director of Advocacy, The ALS Association Florida Chapter

Introduction Video to PatientsLikeMe

This is Digital Me - Uniting to Find the Answers Inside Us

James Murray, Director of Strategic Partnerships, PatientsLikeMe

Impact of the National ALS Registry: Learn How You Can Join the Fight Against ALS

Paul Mehta, MD, Principal Investigator, National ALS Registry

ALS 101: Where to Begin, What to Do

Camila Arizaga, Regional Program Manager, The ALS Association Florida Chapter

 

If you have any questions, please contact your Regional Program Manager HERE.

We will soon be sharing updates about next year's Symposium 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 This Holiday Season?

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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