Ice Bucket Challenge Progress

 

Chapter Highlights

Hurricane Preparedness irma

The 2018 hurricane season officially started on June 1st and according to experts, this year has the potential to be the most dangerous season we've ever seen with more named storms as well as more powerful storms than we've experienced in the past.  We recognize how important it is for people living with ALS and their family members to have the resources they need to make plans to protect themselves in the event of a disaster.  

The Florida Chapter will be hosting an upcoming webinar that will focus on the unique needs of people living with ALS during hurricane season. A panel of clinical experts in ALS care will provide tips to help you prepare for mobility, communication, and nutritional and respiratory essentials ahead of any hurricane or other weather related disaster that may threaten your community.

Preparing for Hurricane Season for People Living with ALS

June 11, 2018

2pm to 3pm ET

 

Participate via telephone or online using the following:

Dial in: 800.768.2983 

Enter Access Code: 6379000 

or participate online using the following link:

https://cc.callinfo.com/r/102gl9dr62x4h&eom

 

Questions?  Please contact Patti Stanco at pstanco@alsafl.org


 

 

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:

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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.


Tampa Bay Rays Logo

 

TIME IS RUNNING OUT!  BUT TICKETS NOW!

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 pre-game lunch buffet with ballpark fare while you watch all of the activities on the field!  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, June 24, 2018               

1:10PM

 
A Pre-game Lunch Buffet is available for purchase and includes all you can eat ballpark fare including: pulled pork, hot dogs, chicken tender bites, potato salad, garden salad, popcorn, potato chips, lemonade and iced tea.  


The cost of the buffet is $24 per person. (PLEASE NOTE: You MUST purchase a game ticket to attend the lunch buffet)
 
Limited Special suite pricing is also available for the afternoon that accommodate up to 16 people.  Suite purchase includes suite access for 16 and game tickets for 16, but does not include catering.  Catering options are available separately through Center Plate catering at an additional cost.  These suites will 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.

 

Buy Tickets Now Button

 

Questions? Contact Julie Niehoff at jniehoff@alsafl.org.

 


 

.Scholarships Banner

 

 

The Rick and Sherry Murray Medical Futures Scholarship is for students who have or have had a spouse, parent, or grandparent diagnosed with ALS, also known as Lou Gehrig’s Disease, and who want to pursue a degree in the medical profession as a result of their experience. 

Applicants must be:

- The spouse, child or grandchild of a person who has been diagnosed with ALS. (Families of every tradition will be considered). 

 - A legal resident of Florida. 

- Currently majoring in any medically-related degree or attending any medically-related certification program. 

- Any age of student may apply - scholarships are not restricted to graduating high school seniors, high school graduates or current undergraduates. 

- Applicants must attend or be accepted to school full-time (as defined by the educational institution) at an accredited two-year or four-year college or university, or vocational-technical school located in the U.S.

All interested students must complete an application and mail it along with a current, complete official transcript of grades (Grade reports are not acceptable. Official transcripts must display student name, school name, degree program, grade and credit hours earned for each course, and term in which each course was taken.), a 500-word essay describing how the student’s experience with ALS has impacted him/her and his/her decision to enter the medical field, and two (2) letters of recommendation. Other requirements are listed on the application.  Deadline for applications is July 13, 2018.

2018 Scholarship Information

 
2018 Scholarship Application

 

If you have questions or would like more information, please contact Sam Luke: sluke@alsafl.org or call 888.257.1717 ext.107.
 

PLEASE NOTE:  To be considered, ALL completed applications MUST BE MAILED to 3242 Parkside Center Circle, Tampa, FL, 33619.


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!
AmazonSmile

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 KingAfter 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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