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Uniting to Conquer Kennedy’s Disease – Supporting Those Affected
We support patients and families affected by Kennedy’s Disease through education, resources, community connection, and research collaboration, while providing research funding to advance treatments and move closer toward a cure.
Our Goal Is Clear: To Help Find a Treatment or Cure for Kennedy’s Disease (KD)

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KDA news and newsletters

Delery Rice

Terry Thompson

John Lauber

Jameson Parker

Kathy Thompson

Steven Rittmaster

Dale Traxler

Lewis Myers

Dan Jacobs

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! #KennedysDisease #SBMA #KennedysDiseaseAssociation #KDA #ExecutiveDirector #RareDisease

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 #KennedysDisease #SBMA #KDA #KennedysDiseaseAssociation

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. #KennedysDisease #SBMA #KDA #Research #RareDisease #AANEM2026

💙 Raising Awareness for Kennedy Disease We’re grateful to the students and Wellness Club at Iroquois Ridge High School irhs.wellness 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! 💙 #KennedysDisease #KennedyDiseaseAwareness #KDA #RareDisease #NeuromuscularDisease

Interested in joining the 100-Step Challenge? Check out John’s Roadmap: https://files.constantcontact.com/a89ef7eb001/a29420ab-3178-4898-b5f3-392240d7a1f6.pdf #100stepchallenge #KDA #kennedysdisease #SBMA

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 #KDA #kennedysdisease #donoradvisedfund #donate #SBMA

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

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 #KDA #Kennedysdisease #SBMA #research

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 #KDA #kennedysdisease #SBMA #ForTheLoveofBoomers

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/ #100stepchallenge #KDA #Kennedysdisease #SBMA

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

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 #KDA #kennedysdisease #raredisease #SBMA #KDAConference

KDA is pleased to announce our 2026 SBMA Research Grants and Waite-Griffin SBMA Fellowship programs. Through these programs, we seek to further understand the pathological mechanisms of and possible treatments for Kennedy's Disease. Submissions for both programs must be received by Monday, June 1, 2026. About the grants: SBMA Research Grants: Grants up to $100,000 are available for one or two years. Junior investigators and senior post-doctoral fellows are encouraged to apply. Waite-Griffin SBMA Fellowship: Fellowships for junior researchers provide $75,000 for one year of salary and benefits and a $2,000 travel allowance. Awardees are expected to devote at least 70% of their time to SBMA research. #KennedysDisease #KennedyDiseaseAssociation #KDA #RareDisease #SBMA

The 10th Annual Dim Sum Give Some is this Saturday, April 18th in Milwaukee, WI! Chefs Dan Jacobs and Dan Van Rite are proud to once again bring this incredible culinary fundraiser to life in support of the KDA. This year's event is anticipated to be the largest yet, featuring a lineup of 35 chefs, including fellow Top Chef and Tournament of Champions contestants, alongside award-winning chefs from across the country. Building on the momentum of previous years, and more than $150,000 raised to date, this event continues to raise awareness and funds for Kennedy’s Disease through the power of food, community, and generosity.

Looking for Kennedy’s Disease resources? We have guides for patients, caregivers, and clinicians. Check out our website: https://kennedysdisease.org/living-with-kd/support/guides.html

KDA is pleased to announce our 2026 SBMA Research Grants and Waite-Griffin SBMA Fellowship programs. Through these programs, we seek to further understand the pathological mechanisms of and possible treatments for Kennedy's Disease. Submissions for both programs must be received by Monday, June 1, 2026. Please visit our website for details and proposal instructions: https://kennedysdisease.org/research/research-grants-and-fellowships.html #KennedysDisease #KennedyDiseaseAssociation #KDA #RareDisease #SBMA

Closer than ever! 💗🦓 #RareDiseaseDay #KDA #KDAConference2026 #rarediseaseawareness #kennedysdisease #SBMA

The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. One out of every 10 Americans has a rare disease. We show our stripes for Kennedy's Disease awareness on #RareDiseaseDay ! #kennedysdiseaseassociation #raredisease #nord

February 28 is Rare Disease Day, a time to stand with the rare disease community—including those living with Kennedy’s Disease. At the Kennedy’s Disease Association, we’re committed to raising awareness, supporting families, and advancing research. Join us by sharing this post or making a donation to help move our mission forward! https://kennedysdisease.org/get-involved/donate.html #RareDiseaseDay #KennedysDisease #KennedyDiseaseAssociation #KDA #RareDisease #SBMA

Saturday, February 28 is the LAST day to participate in our KDA Online Raffle! Use this link to check out the prizes you can win: https://secure.qgiv.com/for/kdaconference/event/2026raffle/

Tomorrow, February 23, is the last day to register for our 2026 KDA International Patient and Scientific Conference before pricing increases! Don’t miss this opportunity to connect with the Kennedy’s Disease community, learn from experts, and be part of meaningful conversations. https://ssw-kda-conference-144-26.pages.dev #KennedysDisease #KennedyDiseaseAssociation #KDA #RareDisease #SBMA

We’re excited to introduce something new: the KDA Online Raffle! Along with our popular in-person Silent and Live Auctions, the our online raffle will help raise even more funds to support KDA programs, research, and advocacy, while giving our community the opportunity to win fantastic prizes. ONLINE TICKET SALES END: Saturday, February 28, 2026 at 4:00 PM EST ON-SITE TICKET SALES END: Saturday, February 28, 2026 at 8:00 PM EST� Winners will be announced at the Gala Dinner Buy tickets: https://secure.qgiv.com/for/kdaconference/event/2026raffle/

Big congratulations to Dan Jacobs! Chef Dan has officially made the cut to compete in the main competition on the Tournament of Champions on the Food Network, starting March 1! This culinary showdown features some of the most talented chefs in the industry, and Dan is stepping onto that stage once again, representing not only his extraordinary culinary skill, but also the strength, resilience, and determination that inspire so many in the Kennedy’s Disease community. Please join the KDA in cheering Dan on in the Tournament of Champions, and come hear his powerful story firsthand at the KDA Conference. #FoodNetwork #TournamentofChampions #KennedysDisease #KDA #RareDiseaseAwareness

Volunteer with Kennedy’s Disease Association and help support individuals and families affected by KD through advocacy, awareness, and programs that matter. Explore volunteer opportunities:https://kennedysdisease.org/get-involved/volunteer.html #KennedysDisease #KennedyDiseaseAssociation #KDA #RareDisease #SBMA

We’re excited to share some news! The Kennedy's Disease Association has been evaluated by Charity Navigator, the nation’s largest charity evaluator, and earned a Four-Star Rating. This is the highest possible rating on Charity Navigator. Charity Navigator’s impartial, third-party evaluation validates our organization’s effectiveness and reliability. You can learn more about Charity Navigator and our rating https://www.charitynavigator.org/ein/770552005

February is Rare Disease Month, and at the Kennedy’s Disease Association, we’re raising awareness for those living with Kennedy’s Disease. By learning, sharing, and supporting our mission, you help strengthen our community and move research forward. Help us make a difference—like, share, or consider donating.

We’re excited to spotlight the voices shaping our 2026 KDA Conference! If you missed it the first time, we’re resharing a powerful video message from our keynote speaker, Dan Jacobs, who shares a preview of what he’ll bring to the stage. You can also learn more about Dan’s story and see our lineup here: https://ssw-kda-conference-144-26.pages.dev/speakers/

Only 4 weeks left to register for the 2026 KDA International Patient and Scientific Conference! Online registration closes February 23; Onsite registration will be available at a higher rate. Register here: https://ssw-kda-conference-144-26.pages.dev See the Conference Agenda here: https://ssw-kda-conference-144-26.pages.dev/conference-agenda/

We are excited to share our official 2026 KDA Conference hoodies! This year’s hoodies were thoughtfully selected and feature premium, sustainably sourced materials, offering a classic, comfortable fit that’s perfect for conference days, travel, or everday wear. Place your order by February 6 for delivery and pickup at the KDA Conference! Order here: https://www.bonfire.com/2026-official-kda-conference-hoodies/ Can’t make it to the conference? Order here for home delivery: https://www.bonfire.com/2026-official-kda-conference-hoodies-home/

The Kennedy’s Disease Association is deeply saddened to share news of the passing of Dr. William R. Kennedy, a neurologist and scientist whose work shaped the scientific and clinical understanding of Kennedy’s Disease, laid the foundation for today’s global research efforts, and transformed the lives of individuals and families affected by this disease. Nearly six decades ago, Dr. Kennedy did something extraordinary. At a time when many individuals were misdiagnosed with ALS and left without answers, he carefully observed, listened, and followed the science. His work led to the identification of what we now know as Kennedy’s Disease, giving patients and families something deeply meaningful: an accurate diagnosis and a path forward with hope. His work advanced the genetic understanding of Kennedy’s Disease, identifying the location of the gene mutation and the mutation itself. What began in one lab has grown into a global research collaboration, involving scientists in many countries to better understand the scope and impact of this disease. Dr. Kennedy was known for his humility, kindness, curiosity, and deep respect for patients. His legacy lives on through every person diagnosed, every family supported, and every step forward in research to find a cure for Kennedy’s Disease. We extend our deepest condolences to the Kennedy family and honor Dr. Kennedy by continuing the work he began. We invite you to visit our website to read the full tribute: Remembering Dr. William R. Kennedy: A Legacy That Lives On for People Affected by Kennedy’s Disease. You’ll also find a link to the obituary, and learn how you can help the KDA honor Dr. Kennedy’s legacy. https://kennedysdisease.org/about-us/news-room/kda-news.html/article/2026/01/12/remembering-dr-william-r-kennedy-a-legacy-that-lives-on-for-people-affected-by-kennedy-s-disease Thank you, Dr. Kennedy. Your impact is immeasurable, and you will always be remembered.

KDA is in need of dedicated volunteers for the 2026 International KD Patient and Scientific Conference! We need photographers, videographers, and general volunteers, both on-site and behind the scenes. You can help make this important event a success. Please reach out to us today at info@kennedysdisease.org See all volunteer opportunities here: https://kennedysdisease.org/get-involved/volunteer.html

"The KDA is extremely fortunate to have such a dedicated team of volunteers that work very hard to raise awareness and funds for Kennedy’s Disease. I am deeply grateful for all the work by KDA volunteers - they have worked countless hours and given unwavering effort to this group and the KDA. The volunteer group has many ideas but too few volunteers to do the work to carry them out quickly enough. I would like to appeal to others who are interested in finding a cure sooner than later to get involved in volunteering with us. This experience would prove to be highly rewarding." Connie S. KDA Volunteer & Fundraising Committee Member Interested in joining? Visit https://kennedysdisease.org/get-involved/volunteer.html

Join the KD Global Patient Registry! This registry is one of the most important ways patients and carriers can contribute to advancing science and care. Your participation: * Helps researchers design better studies * Aids in recruitment for clinical trials * Builds a clearer picture of how the disease affects people over time * May lead to improved treatments and ultimately, a cure Learn more about The KD Registry: https://kennedysdisease.org/living-with-kd/the-kd-registry.html

If you haven’t yet made your year-end contribution, there’s still time. Donations received by December 31 qualify as tax-deductible gifts for the 2025 tax year.

Happy Holidays from the Kennedy’s Disease Association! ✨ Thank you to our incredible community for your continued support, compassion, and commitment. Wishing you a safe, peaceful, and happy holiday season. 💙

Volunteer Spotlight: Dan T., KDA Volunteer & Fundraising Committee Member “I really enjoyed listening in and learning more about the work KDA is doing, from the creative and varied approaches to fundraising to all the exciting events planned for next month. What stood out to me most was how focused and well-organized the meeting was, with each person contributing thoughtful updates. It was inspiring to see how everyone plays a role in moving the organization forward.” 🙌 Interested in making a difference? Join our Fundraising Committee or fill out the volunteer form on our website — we’re looking for support in specific areas across KDA! https://kennedysdisease.org/get-involved/volunteer.html #KennedysDisease #KDA #VolunteerSpotlight

The KDA is making exciting progress toward launching our Kennedy’s Disease Centers of Excellence (CoE) program—an initiative designed to expand and standardize high-quality, multidisciplinary care for everyone living with KD. We’re working to build a stronger network of knowledgeable clinicians, raise awareness of KD, and ensure patients receive consistent, expert care no matter where they live. Although still in development, we hope to begin identifying and certifying qualified neurologists in the coming year. Your support brings us closer to recognizing clinics worldwide and improving access to care for our KD community.

As you consider your year-end giving plans, we ask that you make a special donation to help the KDA continue the important work we're doing for the KDA community. Your generosity helps shape the progress we can make in the coming year. Make your year-end gift: https://kennedysdisease.org/get-involved/donation-form.html

Explore the KDA Gift Shop and show your support with official Kennedy’s Disease Association merchandise, just in time for holiday gift-giving! The items showcased on our website are fulfilled through our trusted partner platform, Bonfire for quality and easy delivery, and if you prefer to make a direct impact, please donate through the KDA website to ensure more of your gift directly supports the KDA community. Gift Shop: https://kennedysdisease.org/the-kda-store/

Welcome to the official Instagram of the Kennedy’s Disease Association! We’re here to raise awareness, support families, and advance research for Kennedy’s Disease. Follow us for updates, resources, community stories, and ways to get involved.

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February 2026

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