KIF1A.ORG

For nearly a decade, Dr. Wendy Chung and the Chung Lab have stood alongside the KIF1A community with unwavering dedication, compassion, and purpose. From day one, Dr. Chung has helped shape the path forward for families affected by KIF1A mutations by advancing research and turning urgency into action.

As we continue our partnership with the Chung Lab at Boston Children’s Hospital, we reflect on our progress, built through years of trust and collaboration. We are deeply grateful for Dr. Chung’s leadership and honored to continue this journey together in relentless pursuit of better care and treatments.

It is with great enthusiasm that we announce a significant next step in our long-term partnership with the Chung Lab. Read more below to learn about the progress we’ve made together so far and our goals for the future of our KIF1A community 💙

KIF1A.ORG Accelerates KAND Clinical Research with Continued Support of Chung Lab at Boston Children’s Hospital - KIF1A It is with great enthusiasm that we announce a significant next step in our long-term partnership with the Chung Lab at Boston Children’s Hospital (B*H). In 2026, KIF1A.ORG will proudly contribute $250,000 USD to support the continuation of KIF1A clinical research in the Chung Lab. Our contributio...

❤️ Today is KIF1A Day 2026 ❤️

Every April 28, we come together to honor our community on KIF1A Day: a day to celebrate our incredible patients and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure. KIF1A Day is not only a moment of reflection and recognition, but a powerful call to action: to raise awareness, accelerate research, and fuel the fight for treatments and a cure.

On this KIF1A Day, we invite you and encourage you to read the exclusive KIF1A Day edition of our Monthly Momentum newsletter to learn more about the stories, events, and achievements from our relentless community.

❤️ JOIN US TODAY! ❤️

🫶 GIVE the gift of donation in honor of KIF1A Day. Help us fuel our mission, and ignite change for our KAND community!
👕 WEAR your KIF1A gear and wear it proud! Whether a KIF1A.ORG shirt or our signature colors of red and blue, let's show the KIF1A community our support
🗣️ SHARE stories, make our voices loud! Whether sharing your personal story or sharing posts and stories from KIF1A.ORG, our collective voice is a powerful tool for change.

https://www.kif1a.org/blog/april-monthly-momentum-kif1a-day-edition/

April Monthly Momentum - KIF1A Day Edition! - KIF1A It’s KIF1A Day! Every April 28th, we come together to honor our community on KIF1A Day—a day to celebrate our incredible patients and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure. KIF1A Day is not only a moment of ref...

👋 Meet Naomi. A KIF1A parent. A physician. A long-term KIF1A.ORG policy and advocacy volunteer. And so much more.

🏛️ Today we are sharing Naomi’s stories and experiences from attending the 2026 Rare Disease Week in Washington D.C., hosted by the EveryLife Foundation for Rare Diseases. With over 165 patient advocacy organizations participating, this event presented many opportunities for patient advocacy and community engagement including receptions, community connection, legislative conferences, and meetings with legislators.

📖 Settle in and read on to learn more about Naomi’s journey of putting KIF1A advocacy in action.

https://www.kif1a.org/blog/kif1a-policy-and-advocacy-in-action-patient-and-family-voices-shine-during-rare-disease-week/

Cure KIF1A Today KIF1A.ORG is dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder and accelerating research to find a cure.