Local Advocacy

The ALS Association Florida Chapter works both federally and locally to advocate on all fronts for the ALS community here in Florida. Board members, staff, and advocacy specialists in Tallahassee have made progressive strides in urging legislators to make decisions that will positively impact the lives of people living with ALS and their families. 


Due to the global pandemic, the annual ALS Association Federal Advocacy Day was held remotely on June 1-3, 2020.  Nearly 60 volunteers from The ALS Association Florida Chapter participated, which is the largest delegation in the Chapter’s history.  All told, volunteers interacted with all 29 Florida legislative offices during the event. Key issues that were presented during these meetings included:

•    Increased funding for ALS research;
•    The ALS Disability Insurance Access Act (S.578/H.R. 1407), which will eliminate the five-month Social Security Disability Insurance waiting period for people living with ALS;
•    The CONNECT for Health Act (S. 2741/H.R. 4932), which will expand access to telemedicine and telehealth for people with ALS.


At the end of June, Florida Gov. Ron DeSantis approved $800,000 in state funding for the  Bitner Plante ALS Initiative of Florida. The Initiative provides support for ALS patients seeking treatment at the multidisciplinary ALS clinics located at Mayo Clinic, Jacksonville; University of South Florida, Tampa; University of Miami; and UF Health Jacksonville. 

This year's appropriation was an increase from $100,000 the program received in the previous fiscal year. Rep. Travis Cummings, Sen. Aaron P. Bean, Rep. Holly Raschein, Rep. MaryLynn Magar and Sen. Rob Bradley all served as champions for the Bitner Plante Initiative throughout the state's budget planning season. 

Be sure to thank Gov. DeSantis, as well as your state senator and state representative, for their support of Bitner Plante. If you are using Twitter or Facebook, don't forget to tag @ALSFlorida!

If you are interested in joining our advocacy program, please sign up here.

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