A tight knit community from Bonita Springs, Florida is raising awareness and funds for Amyotrophic Lateral Sclerosis. Madeline and Brian Kennedy joined a group of friends and neighbors from Troy, New York; setting up homes in the golf community of Worthington Country Club in Bonita Springs, Florida. The community supports ALS research in friendship and solidarity with Madeline, who has ALS.

This generous group not only helps with day-to-day support and encouragement but has a broader reach by hosting an annual “Worthington Fore ALS” community event, which includes activities such as golf, tennis, and bocce, to raise funds to infuse the cutting-edge research to help the thousands of people who are afflicted with this disease each year. The event, now in its fifth year, has raised more than $265,000; much of which supports the ALS research and care at Mass General, led by Dr. Merit Cudkowicz, Madeline’s physician.

Over 300 people attended this festive affair on January 26th, 2019, which concluded with dinner, raffles, live and silent auctions. The extended Kennedy family was in attendance and Madeline was very much a central presence at the event. Dr. Sabrina Paganoni, from the Healey Center for ALS at Mass General, made a presentation at an earlier education session. Dr. Paganoni offered insights into the critical opportunities for changing the landscape of ALS diagnosis, treatment and research.

“Everything is new in ALS”, said Dr. Paganoni during her talk. Newly designed clinical trials are patient-centric, offering exciting and faster ways of identifying genes and biomarkers. These advancements will help develop drugs specifically targeted to a specific patient profile intended to slow disease progression. She also spoke about the important telemedicine initiative at Mass General, which offers expanded access for those unable to travel to Boston.

The vitality and support in this Florida community is a hopeful reminder of the important work that is breaking new ground at the Healey Center for ALS and beyond.