ALS Ice Bucket Challenge Progress

 

Chapter Highlights

2019 HHS Website Hero

Join us for a day of informative demonstrations 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, and plenty of opportunities to “Ask the Experts.”

   

Here are just a few of the event highlights: 

9:00AM - “Accelerating ALS Therapy Development: The First ALS Platform Trial” - Merit Cudkowicz M.D., Chief, Neurology Department, Director, Sean M. Healey & AMG Center for ALS, Director, Neurological Clinical Research Institute 

12:30PM - “Caring for the Caregiver, Preventing Compassion Fatigue” - Vonceil Levine, LCSW, Haven Hospice

1:45PM - "Ask the Experts" - Florida ALS clinic experts will talk about what's happening around the state and answer questions from the audience - Michael Pulley, M.D., Ph.D.,  Björn Oskarsson, M.D.,  Tuan Vu, M.D.,  Tawfiq Lahham, M.D., Volkan Granit, M.D., MSc,  James Wymer, M.D., Ph.D., Bryant Le Vuong, D.O.

3:45PM - "A Spice, a Banned Substance, and a Filter: Wild New Studies in Our Search for a Cure" - Richard S. Bedlack Jr., M.D., Ph.D., MS, Duke Health, Founder of ALSUntangled 

To see this year's full agenda, CLICK HERE. 

We hope to see you there!  

Rosen Shingle Creek 

9939 Universal Blvd.  |  Orlando, Florida 32819 

Saturday, September 14, 2019  |  8:00AM - 5:00PM 

 

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Discounted room rates are available at the Rosen Shingle Creek, 

BOOK TODAY! 

 

Questions?  Please contact the Chapter via email at info@alsafl.org  

or call 888.257.1717. 

 

Presented by: 

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Co-Sponsored by:

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Walk Landing Page Hero 2019

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 16, 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

 

 


 

Ride 2019

 

2019 RIDE to Defeat ALS Registration is Open!

The Ride to Defeat ALS is a one-day endurance event designed to appeal to every level of rider. We offer the Metric Century ride (approx. 62 miles), a 25 mile ride, and a 10 mile ride. You'll experience all of the beautiful scenery and challenging terrain Crews Lake Wilderness Park and the Suncoast Trail have 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 are welcomed back by cheering crowds and finish line festivities that include entertainment, and a healthy lunch.

 

Ride to Defeat ALS

November 2, 2019

Crews Lake Wilderness Park, Spring Hill, FL

 

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Test your strength. Push your limits. FIGHT ALS.

Grab your friends and join us for this opportunity to be a part of

Team Challenge ALS as we challenge ALS at the highest level.

 

Questions?  Contact Kate Sanstrom at ksanstrom@alsafl.org 

or call 888.257.1717 ext 115.


 

Hurricane 2018

Hurricane Season is Here!

June first marked the beginning of Hurricane season here in Florida, are you prepared?  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 information and resources to help you and your family plan and prepare for this hurricane season before it arrives.
Make the conscious decision to be proactive and be ready.  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.

CLICK HERE to find critical resources in your local area.


Support Group Web Email 2019

ALS Resource Connections

We understand that dealing with ALS is physically, emotionally and financially devastating for the person diagnosed and their family.  ALS Resource Connections groups provide a caring, supportive, open environment for people to gather, connect, and talk with one another.  These groups are open to people living with ALS, their families, caregivers and friends, and are located around the state to provide opportunities to learn more about living with the disease from others who understand the challenges, and to help establish a network of valuable resources and sustained support.  

A Chapter Regional Program Manager facilitates each meeting and will have speakers on relevant topics combined with time for attendees to discuss and share information and provide feedback to one another.

To learn more about a group near you, CLICK HERE.


 

 Did You Know You Can Support the Florida Chapter Every

TimeYou 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.“

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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.


 

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