Kennedy's Disease Association

05/10/2026

05/07/2026

Interested in joining the 100-Step Challenge?

Check out John’s Roadmap:
https://files.constantcontact.com/a89ef7eb001/a29420ab-3178-4898-b5f3-392240d7a1f6.pdf

05/05/2026

By recommending a grant to the KDA through your DAF, you can help fund research, education, and support programs for individuals and families affected by Kennedy’s Disease.

https://kennedysdisease.org/fundraising/kda-donor-advised-fund.html

04/30/2026

Looking for support groups?

Visit our website to find them: https://kennedysdisease.org/living-with-kd/support/

04/29/2026

The U.S. Food and Drug Administration (FDA) is inviting members of the rare disease community to share feedback on current educational resources that support the development of safe and effective therapies for rare diseases.

Read more about this on our website:

https://kennedysdisease.org/about-us/news-room/kda-news.html/article/2026/03/02/fda-seeks-feedback-from-rare-disease-community

KDA news and newsletters

04/28/2026

Dr. Rachel Harding (University of Toronto, SGC-Toronto), in collaboration with Agora Open Science Trust and the Structural Genomics Consortium (SGC), is leading a project focused on accelerating the development of targeted therapeutic strategies for Kennedy's Disease, also known as Spinal Bulbar Muscular Atrophy (SBMA). Dr. Harding received a research grant from the KDA to fund this project. She will collaborate with SBMA researchers in Italy and the UK in project implementation.

Find out more: https://www.thesgc.org/news/new-open-science-project-funded-accelerate-therapeutic-discovery-spinal-bulbar-muscular

04/26/2026

John, KDA’s Treasurer, was recently featured on For The Love of Boomers, a YouTube channel created by John Frantz, author of the For The Love of the Baby Boomer book collection of short stories, essays and poems.

In his interview, John shares his story of adapting to Kennedy’s Disease. It's a powerful reminder that even in the face of change, there is strength, resilience, and hope.

Watch it here:
https://www.youtube.com/watch?v=Fbr12Foxcpg

04/24/2026

Start Your Fundraiser Any Time, Anywhere in the World!

Many men affected by Kennedy’s Disease can’t walk 100 steps without assistance. There is no cure – yet, but there is hope. The 100-Step Challenge symbolizes their daily struggles, strength and perseverance. With greater awareness and the right support, we can help create a world where no one has to face this journey alone.

How It Works:

1. Sign up as an individual to start your own peer-to-peer fundraiser.
2. Raise funds your way by setting a goal that's meaningful to you.
3. Share your story and invite friends, family, and your network to support your efforts using our simple online tools. Create your fundraiser to access our easy-to-use email and social media templates.

https://secure.qgiv.com/event/100-stepchallenge-2026/page/about-kda-100-step-challenge/

04/21/2026

The 14th Annual KD Golf Scrabble is Saturday, May 2nd in Magnolia, Texas!

Thanks to the generosity of supporters like you, the KD Golf Scramble has raised over $425,000, including a record-breaking $42,000 in 2025 alone. These funds directly support research, education grants, and initiatives like the important Banbury Conferences.

Register, donate, or learn more: https://www.kdgolfscramble.com

04/19/2026

The 2026 International Patient and Scientific Conference was a tremendous success, bringing together patients, caregivers, researchers, and advocates for a powerful few days of learning, connection, and inspiration.

Check out the highlights and photos: https://kennedysdisease.org/get-involved/events/conferences.html