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.

FEDERAL UPDATE

Last year, the annual ALS Association Federal Advocacy Day was held remotely on June 8-10, 2021. Nearly 50 volunteers from The ALS Association Florida Chapter participated. All told, volunteers interacted with all 29 Florida legislative offices during the event.

Key issues that were presented during these meetings included:

ALS research and expanded access funding
Finding new treatments and cures while optimizing current treatments and care
Preventing and reducing the harm of ALS to make it a more livable disease by 2030

Go here to learn more about The ALS Association’s public policy priorities.

National Virtual advocacy conference

Held from June 14-16, the National ALS Virtual Advocacy Conference will bring together ALS advocates from across the country to learn the latest updates on ALS research, care services and advocacy. Conference sessions will be held from June 14, 15 and 16 from 3-4:30 p.m. EDT. All conference attendees will have the opportunity to contact their members of Congress throughout the event. If you have any questions about the conference, please email advocacy@als.org. To register, please visit www.alsadvocacyconf.org. There is no fee to attend but registration is required.

FLORIDA UPDATE

In May 2021, Florida Gov. Ron DeSantis approved $1 million in state funding for the Bitner Plante ALS Initiative of Florida. The Initiative provides support for people living with ALS seeking treatment at the multidisciplinary ALS clinics located at Mayo Clinic, Jacksonville; University of South Florida, Tampa; University of Miami; Holy Cross Hospital, Ft. Lauderdale; and UF Health Jacksonville.

Sen. Aaron P. Bean and Rep. Jayer Williamson 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.