Every step we take is made possible by the dedication of our all-volunteer team and the generosity of our supporters. As a 501(c)(3) nonprofit organization, the Kennedy' Disease Association is proud to direct 90% of all donations toward funding research. 

Since its inception, we have contributed over $2.5 million to research aimed at better understanding, treating, and ultimately finding a cure for Kennedy’s Disease.

In 2025, we are actively reviewing several promising new research proposals, each with potential to advance treatment and bring us closer to a cure.

The 2025 Rare Disease Day Bay Area event brought powerful stories from rare disease patients, live performances, and an outpouring of community support right in San Jose’s Japantown. The 7th annual event raised over $9,000 for the Kennedy’s Disease Association, supporting research and hope for those affected by rare neuromuscular disorders.

Thanks to the ongoing support of Milwaukee’s culinary community, the 2025 Dim Sum Give Some fundraiser once again delivered meaningful impact in the fight against Kennedy’s Disease. Spearheaded by Chef Dan Jacobs, co-owner of two Milwaukee restaurants and runner-up on Top Chef Season 21, this vibrant tasting event brought together over 25 renowned chefs, including two James Beard Award winners and seven of Dan’s fellow Top Chef contestants.

Proceeds from the event benefit the Kennedy’s Disease Association, supporting research into the rare neuromuscular disorder that Dan was diagnosed with in 2016.

Since its inception in 2017, Dim Sum Give Some has raised more than $150,000, demonstrating the power of community and cuisine in driving awareness and hope.

Thanks to events like the 2025 13th Annual KD Golf Scramble real progress is being made in the fight against Kennedy’s Disease. Over the past 13 years, this incredible tournament has raised more than $343,000 to support research initiatives, raise awareness, and bring hope to families affected by this rare neuromuscular disorder. This year’s event continued that tradition by generating the funding needed to accelerate scientific research and remind everyone touched by Kennedy’s Disease that they are not alone, and that a cure is within reach.