KIF1A.ORG

05/20/2026

We’re proud to share that Dr. Dylan Verden, KIF1A.ORG's Chief Science Officer, will be speaking at the 4th Annual Nasal Formulation & Delivery Summit TOMORROW on May 21.

Dylan’s presentation, “Reimagining Rare Disease Treatment Through Intranasal Delivery to Transform Patient Experience,” highlights the importance of innovation, accessibility, and patient-centered design in rare disease research and care. We are honored to have Dylan representing both the KIF1A community and the broader rare disease community on this stage.

05/13/2026

Executive Director, Dominique, and Chief Science Officer, Dylan, have had quite the trip bringing KIF1A.ORG to Boston this week! So far they've met with clinicians, researchers, institutions, and so many other stakeholders leading compassionate initiatives for our KIF1A community ❤️

05/08/2026

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 💙

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...

05/06/2026

👀 ICYMI: Yesterday, KIF1A.ORG Co-Founder Luke Rosen spoke live on air with Ainsley Earhardt of Fox News 👏

In this interview he discussed his daughter Susannah's battle with KAND, the relentless researchers at Murdoch Children's Research Institute - MCRI working towards treatments, and more!

https://www.foxnews.com/video/6394677774112

KIF1A.org founder Luke Rosen discusses his daughter’s battle with a rare neurological disorder and the Murdoch Children’s Research Institute’s work to advance potential treatments on ‘Fox & Friends.’

05/05/2026

🚨 BIG NEWS: KIF1A GLOBAL DOCUMENTARY PREMIERES TODAY! 🚨

It is with great honor and excitement we share that today, May 5, a NEW documentary centered around our KIF1A community has been released for viewing!

Join journalist Benjamin Hall in “Hope Starts Here: Murdoch Children’s Research Institute” as he follows three families battling a rare childhood disease while scientists at the Murdoch Children’s Research Institute race against time to develop treatments. This documentary was made possible through partnership with Fox News, Murdoch Children's Research Institute - MCRI, and our Australian KIF1A Community Kif1a Australia Foundation.

Ways to watch:

Fox Nation: https://nation.foxnews.com/hope-starts-here-murdoch-childrens-research-institute-nation/

Tubi: https://tubitv.com/movies/100057797/hope-starts-here-murdoch-children-s-research-institute

Thank you to all involved in this moving piece, highlighting the strength of the KIF1A community, the dedication of KIF1A researchers, and the urgent need for treatments and cures.

04/28/2026

Today is KIF1A Day. 💙
Today, we celebrate our superheroes all around the world.
KIF1A Associated Neurological Condition (KAND)
is an ultra-rare, neurodegenerative disorder…
with only around 600 known cases worldwide.

It is a condition that can take away a person's ability to walk,
to talk, and to see.

Different languages.
Different journeys.
One community.

Every person featured here is part of something incredibly special.
Their days are filled with challenges
in moments many of us move through so easily…
like walking, talking, and everyday life.

And yet
they are brave.
they are resilient.
they are changing the world simply by being in it.

Behind them are incredible families and local communities
loving, supporting, and never giving up.
We also recognize the medical teams and researchers
working tirelessly
to find a treatment, and one day, a cure.

KIF1A may be rare…
but together, our voices are strong.
Today is about awareness.
Today is about connection.
Today is about our children.
Together, we stand.

Together, we share their stories.
Together, we fight for a future.
Today, on KIF1A Day 28 April,
we stand together as one.

💙 We have hope. 💙

Thank you to KIF1A Australia leader Jeanette Harris for making this video and to everyone who contributed your pictures, videos, and stories!

04/28/2026

Thank you! ❤

KIF1A-associated neurological disorder (KAND) is a neurodegenerative disorder that affects how cells transport important materials within the nervous system. KAND does not affect any two people the same way. Progression and severity of KAND varies by mutation, and some mutations are more common than others. Some common symptoms of KAND include development differences, epilepsy, vision challenges, muscle weakness, and movement difficulties.

Today we recognize the individuals, families, researchers, and advocates working to raise awareness and advance research for the KIF1A community.

04/28/2026

❤️ 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/

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...

04/27/2026

👀 KIF1A Day is TOMORROW!

❤️ Join us as we celebrate our incredible community and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure.

Don’t forget your shirt… 😉

https://www.kif1a.org/events/kif1a-day-2026/

04/26/2026

👋 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/

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

04/25/2026

🚨 ALERT: A KIF1A Week Science Saturday Exclusive! 🚨

🧬 Click the link below to learn more about recent KIF1A research from Dr. Jayne Aiken in her pursuit to study the diverse mutations behind KAND. As a longstanding member of our KIF1A.ORG Research Network, Dr. Aiken's newest preprint publication dives into topics like heterogeneity, specific KIF1A mutation impact, and more!

🫶 Thank you to KIF1A.ORG Volunteer Roberto Ogelman, PhD for authoring this piece and bringing science communication to our KIF1A Community.

https://www.kif1a.org/blog/science-saturday-studying-the-diverse-mutations-behind-kand/