As fiscal year 2020-21 has drawn to a close, The ALS Association Florida Chapter would like to reflect on accomplishments of the past year in pursuit of our vision to create a world without ALS. The past year was much different that anyone could have imagined, but our volunteers and staff worked tirelessly to ensure families affected by ALS received the support they needed.

Ninety-three percent of the 1,350 families battling ALS in Florida are currently registered with our Chapter. This allows us to better connect those families with resources, specialized care consultation and much more that we provide. Additionally, we approved 25 percent more Care Assist Grants as compared to the previous fiscal year, and we responded to more requests through our Equipment Loan and Assistive Technology programs.

The ALS Association Florida Chapter has the opportunity to actively partner with one of the country’s most extensive networks of clinics that combine multidisciplinary care with cutting-edge research. Holy Cross Health in Ft. Lauderdale became Florida’s newest ALS Association Certified Treatment Center of Excellence in March, joining Mayo Clinic, UF Health in Jacksonville, University of Miami and University of South Florida. We are also helping to expand access to multidisciplinary care by supporting our Affiliated ALS Clinics, including Advent Health Medical Group Neurology in Winter Park, Lee Health in Ft Myers, Orlando Health, Sarasota Memorial Health Care System and UF Health Gainesville.

The Chapter successfully advocated for $800,000 in state funding to support the Certified Treatment Centers of Excellence through the Bitner Plante ALS Initiative of Florida. We also secured 18 co-sponsors among Florida’s congressional delegation for the ALS Disability Insurance Access Act, helping to propel this important bill into law in December.  Thanks to this law, the 5-month waiting period will be removed and families dealing with ALS will now have immediate access to Social Security Disability Insurance.

Of course, this past year was also met with some challenges. We were unable to hold any in-person fundraising events, resulting in more than 50 percent less event revenue to the Chapter than originally budgeted. The team worked hard to find other ways to raise much needed resources to support ALS families in the state, but restrictions related to the global pandemic limited those options as well.

It is our hope that many of the most daunting challenges associated with the pandemic are behind us. Our Board of Directors will be launching a three-year strategic planning process designed to accelerate our progress toward our organizational vision. In the meantime, it’s important that you know how much we value the crucial part everyone plays in our Chapter’s progress.