Kennedy's Disease Association

10/21/2026

We're pleased to announce that Delery Cook Rice has joined the Kennedy’s Disease Association (KDA) as our first-ever Executive Director! Delery officially joined the KDA team on October 5, 2026.

With more than 20 years of nonprofit leadership experience, Delery brings extensive expertise in fundraising, strategic development, disability advocacy, and building partnerships that make a meaningful difference in people’s lives.

Her experience and passion for supporting individuals with disabilities and their families will help strengthen KDA’s work as we continue advancing research, providing education, and supporting individuals and families affected by Kennedy’s Disease.

As the KDA enters this exciting new chapter, we look forward to the opportunities ahead and the difference we can make together.

Please join us in welcoming Delery to the KD community!

10/07/2026

Hopeful news for the Kennedy's Disease community 💙

AnnJi Pharmaceutical has announced that its experimental drug AJ201 is moving into a Phase 3 clinical trial for Kennedy's Disease (SBMA).

About 200 patients are expected to take part at research sites around the world, with the U.S. as a key location.

A potential treatment is a meaningful step forward for the Kennedy’s Disease community and everyone impacted by the disease. The KDA will keep our community updated as the trial progresses.

Read the full story: https://kennedysdisease.org/about-us/news-room/kda-news.html/article/2026/10/07/promising-kennedy-s-disease-treatment-moves-into-the-final-stage-of-testing

10/05/2026

💙 Raising Awareness for Kennedy Disease

We’re grateful to the students and Wellness Club at Iroquois Ridge High School in Oakville, Ontario, Canada, for helping raise awareness of Kennedy Disease.

Thank you for organizing an event to bring attention to this rare neuromuscular disease. Your efforts are helping more people learn about Kennedy Disease and the individuals and families affected by it.

Thank you for standing with the Kennedy Disease community! 💙

10/01/2026

The Kennedy’s Disease Association is proud to launch KD Voices, a new initiative designed to bring the lived experiences, perspectives, and priorities of the Kennedy’s Disease community directly to pharmaceutical and biotechnology companies developing potential therapies.​

​We believe the KD community should have a voice in the development of future treatments. ​

KD Voices will bring together a community of volunteers, including people living with Kennedy’s Disease and care partners who want to help make sure the KD community is heard. ​

We’re looking for volunteers to help shape the future of KD Voices.​

Learn more: https://kennedysdisease.org/get-involved/kd-voices.html

Express your interest in participating: https://www.surveymonkey.com/r/LQ59Y3K

Together, we can help shape the future of KD research and therapy development.

09/30/2026

KDA is at AANEM 2026!

The KDA is proud to be exhibiting at the AANEM Annual Meeting this week. We're raising awareness for Kennedy's Disease/SBMA, and connecting with neurologists, researchers, healthcare professionals, and others who are working to advance understanding and treatment of neuromuscular diseases.

We’re also pleased to have Dr. Abdullah Al Qahtani and Dr. Christopher Grunseich in attendance. Their continued work and commitment to Kennedy’s Disease/SBMA help strengthen connections between the clinical and research communities.

If you're in the area, check out Dr. Al Qahtani's presentation, “To Infinity and Beyond: SBMA as a Model for Next Generation Biomarkers” on Thursday, October 1.

We’re looking forward to learning from the experts at AANEM and continuing to build awareness, collaboration, and momentum around Kennedy’s Disease research and care.

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