Every connection, donation, and shared story brings us one step closer to a world without Kennedy’s Disease.
Since 2000, KDA has empowered patients and families, supported groundbreaking research, and built a global community grounded in compassion, education, and action. As a volunteer-run organization, we make every dollar and every effort count.
What We’ve Achieved Together
$1 Million+ Invested in Research
We've funded over 30 research projects across leading academic institutions from around the world to advance our understanding of Kennedy’s Disease and potential treatments.
Global Awareness
Our resources and support reach individuals and families in over 44 countries and helps create a strong and connected international community.
Community and Scientific Collaboration
KDA Patient and Scientific Conference
The KDA hosts an annual patient and scientific conference to provide a forum that connect patients, researchers, and medical professionals. We bring researchers, clinicians, and patients together to share the latest findings and foster collaboration across disciplines.
SBMA Research Workshops
KDA is a proud sponsor of the annual SBMA Research Workshop, made possible with thanks to the KDA's annual Texas KD Golf Scramble. The SBMA Research Workshop is designed to be collaborative efforts with scientists from related fields joining SBMA researchers to share research ideas and discuss possible approaches to therapies and a cure for Kennedy's Disease. The workshops not only provide new perspectives to KD research, but also bring new, experienced scientists including international experts, into the KD research community.
Patient and Family Support
We help families navigate the challenges of living with Kennedy’s Disease through educational resources, support groups and online communities for individuals and families affected by KD.
Fundraising Campaigns
We raise awareness and funds every year with the help of our supporters around the world through fundraising campaigns: DimSum Give Some, Texas KD Golf Scramble, Bay Area Rare Disease Day and the 100-Step Challenge.
How Your Donations Make a Difference
Over 95¢ of every dollar received by the KDA is used for Kennedy’s Disease research and education. This is possible because the KDA is an all-volunteer organization, including the board of directors and everyone who engages in fundraising and our day-to-day operations.
