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 reflection and recognition, but a powerful call to action: to raise awareness, accelerate research, and fuel the fight for treatments and a cure.
We’ve had a record breaking year since KIF1A Day 2025, and invite you to learn more about our accelerated momentum by reviewing our 2025 Impact Report. Our progress is palpable – one story, one step, one achievement at a time. Thank you to all who continue to support our mission and community ❤️
Here are three ways to get involved today on KIF1A Day:
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! Need last minute gear? Shop our Bonfire store full of apparel options.
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.
This year, KIF1A Day concludes our first ever KIF1A WEEK – a series of community focused events shining a light on so many heroes who make our mission possible. In this special edition Monthly Momentum, we are excited to recap the stories, events, and achievements from our relentless community during KIF1A Week. ENJOY!
💙 KIF1A Week 2026 started with success at the Boston Marathon! 💛
✅ BOSTON MARATHON: MISSION ACCOMPLISHED! ✅
🎉 Let us all congratulate Damon Gohata, uncle to KIF1A Superhero Maddox, who FINISHED the Boston Marathon in support of Boston Children’s Hospital and our entire KIF1A community!
👏 Not only did Damon complete the marathon in a speedy 3 hours, 9 minutes, and 3 seconds… he also raised over $11,000 for KIF1A research! Thank you to all who helped Damon on his road to the Boston Marathon.
💕 Damon, there are not enough words to describe how proud the ENTIRE KIF1A community is of you and your achievements.
🎾 Searchland Padel Day for KIF1A! 🎾
On Wednesday in the United Kingdom, Searchland hosted a company Padel tournament, bringing together 74 people from 34 companies for a friendly event, great conversations, and some very impressive rallies.
Where does KIF1A.ORG fit into this story? This year, Searchland dedicated the event to KIF1A.ORG as their feature charity and raised over $2,000 USD for our organization!
A special thank you to one of our United Kingdom KIF1A Ambassadors, Marianne de la Roche, for speaking on behalf of KIF1A.ORG, representing our organization and community, and sharing her story with the event participants. Our community is global 🌍 , strong 💪 , and taking action ‼️
Thank you Searchland for dedicating your event to our KIF1A community! Your allyship and advocacy mean so much ❤️
🧬 KIF1A.ORG Research Roundtable Brings Patient and Research Community Together 🧬
‼️ As we continue to meet more patients with KIF1A mutations, we strive to address the complex and diverse experiences in our community. In this month’s Research Roundtable, Dr. Dylan Verden discussed two very different ends of the KIF1A spectrum: Severe mutations that shorten lifespan and drive our urgency to develop therapies and treatments, and an emerging late onset adult population that is underrepresented in research and therapeutic development.
🤝 Hosted on Thursday April 23, our attendees were split 50/50 between researchers and members of our patient and family community. Creating shared spaces to adjoin these stakeholders is key to our goal of centering patient voices in scientific discovery. Thank you to all who attended and contributed to our convening!
📽️ Weren’t able to make our Research Roundtable meeting? Click the link below to watch!
🧪A KIF1A Week Science Saturday Exclusive! Dive into Research From Dr. Jayne Aiken 🧪
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.
🏛️ KIF1A Policy and Advocacy in Action: Patient and Family Voices Shine During Rare Disease Week 🏛️
👋 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 Everylife Foundation for Rare Diseases. With over 165 patient advocacy organizations participating, presenting many opportunities for patient advocacy and community engagement including receptions, community meet ups, legislative conferences, and meetings with legislators.
📖 Settle in and read on to learn more about Naomi’s journey of putting KIF1A advocacy in action.
Thank you, today and KIF1A Day and every other day, for being a vital part of our community. Your continued support means the world to us, and together, we will keep moving toward a brighter future for all those affected by KAND.
