Updates from KIF1A.ORG
Happy March from KIF1A.ORG! Thank you all for reading about what we’ve been up to this month, including:
- A New Face: The KIF1A.ORG team is growing
- Worms and KIF1A: What do they have in common?
- 2026 Boston Marathon: Supporting community one step at a time
- Miles the Matter 2026: Wrap up and gratitude
- New Research: How mice are helping develop KIF1A genetic therapies
Before you dive into March Monthly Momentum, please enjoy a new educational video for our community, made possible by our compassionate advocates and partners at Advarra.
Welcome Our New Director of Development, Marcy Rubic!
We are thrilled to share the news that our team at KIF1A.ORG has grown! For the first time in KIF1A.ORG history, we have hired a dedicated Director of Development, aimed to help advance our organization in the areas of fundraising and donor relations, campaign support, and community engagement and events. Read below for more information about Marcy’s previous work experience and please join us in welcoming her to KIF1A.ORG!
Marcy Rubic, M.A.
Director of DevelopmentMarcy@kif1a.orgMarcy Rubic brings more than two decades of nonprofit leadership experience to KIF1A.ORG, specializing in strategic fundraising, major gifts, and organizational growth. Throughout her career, she has built and led high-impact development programs that strengthen mission-driven organizations and expand support for patients and families.
Prior to joining KIF1A.ORG, Marcy served as Executive Director of The Limb Preservation Foundation in Denver, where she led a multi-year organizational revitalization that significantly expanded fundraising and program support for patients at risk of limb loss. Her leadership resulted in substantial growth in operating revenue and increased investment in patient services.
Earlier in her career, Marcy held senior development roles with national and healthcare nonprofits, including Facing Our Risk of Cancer Empowered (FORCE), KishHealth System Foundation, and the Juvenile Diabetes Research Foundation. Across these roles, she has built major and planned giving programs, led successful capital campaigns, and cultivated strong partnerships with donors and community leaders.
Marcy is passionate about connecting people to meaningful opportunities to accelerate research and improve the lives of patients and families affected by rare disease.
KIF1A In the Classroom… with Worms?!
This month we are featuring one of our long-term collaborations with Stanford University students enrolled in the undergraduate course “Introduction to Laboratory Research in Neuronal Cell Biology”. Led by Dr. Rebecca Shi, this class is designed to introduce and engage students in the process of scientific research and inquiry. For almost three years, Dr. Shi has dedicated her research theme of this class to KIF1A/KAND, focusing on what we can learn about KIF1A mutations using C. elegans worm research models and bringing patient/parent voices into the classroom. To learn more about our partnership, click on the button below.
Below you will find research posters from this semester of students, and we encourage you to look at what they found! Thank you to the students, parents, patients, Dr. Shi, and Stanford University – all who make this unique and meaningful collaboration possible.
KIF1A at the 2026 Boston Marathon!
The world renowned Boston Marathon is less than a month away and we are excited to highlight 2026 qualifying runner Damon Gohata! Damon has partnered up with the Boston Children’s Hospital Miles for Miracles program with a goal to raise $10,000 for KIF1A research at BCH! To learn more about Damon’s connection to our KIF1A community and to support his fundraising goal, click the button below. Damon, we are all so proud of you and cheering you on every step of the way!
Miles that Matter for KIF1A 2026 Was a Success – THANK YOU!
Thank you to all who participated in Miles that Matter for KIF1A 2026! This year’s 28-mile, 28-day challenge was more than a virtual event – it was a powerful demonstration of what our community can accomplish together. Over 28 days, we turned steps into awareness and movement into momentum. Together, we completed thousands of miles and raised critical funds that directly support our mission. These dollars are not symbolic – they are strategic. They fuel advocacy efforts, accelerate research initiatives, strengthen our global community network, and help us push forward solutions for every KIF1A warrior and family.
As awareness grows around rare disease, so does our collective voice. Each post we shared amplified that voice. Each donation signaled that our community will not be overlooked. Each mile honored the strength and resilience of our warriors and KIF1A angels.
📊 Final Results: 2026 Miles That Matter for KIF1A
- 979 participants
- 53 teams
- 10,702 activity entries, totaling more than 39,026 miles (that’s 1.5 times around the Earth!)
- Over $70,000+ USD raised by our amazing KIF1A community!
What makes this challenge so meaningful is not just the funds raised – it’s the unity behind it. Families, friends, clinicians, researchers, and supporters moved together with a shared purpose. That kind of solidarity builds momentum that lasts far beyond February.
Because of you:
• Research conversations continue moving forward.
• Advocacy efforts gain strength.
• Families feel seen and supported.
• Hope becomes action.
We look forward to seeing you all at the starting line again in 2027!
New Pre-Print Scientific Article: KIF1A and the Potential of Prime Editing
Researchers have developed a remarkable new tool, powered by machine learning, that makes gene editing more efficient! Gene editing works like a pair of “molecular scissors” to repair or modify a person’s genetic code. While this technology has enormous promise, figuring out how to make it work well has always been a slow and difficult process. This new tool changes that by doing much of the hard work automatically, helping scientists get it right, faster.
Most excitingly for our community, researchers used this tool to correct a KIF1A mutation in the brains of living mice. This represents the first successful use of prime editing in an animal model of KAND, which is a huge step forward! These studies are still in the early stages of development and translating the therapy from mice to KAND patients will take time, but this kind of creative science brings us real hope for future treatments.
The Jackson Laboratory has been a long-term champion of KIF1A research, starting with KIF1A.ORG’s “We Need A Mouse” campaign in 2017. In 2023 they collaborated with the Liu Lab receive federal funding for a KIF1A-centered prime editing project. In 2026 we’re grateful to celebrate this milestone in a long and fruitful partnership.
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
It’s astonishing what a small group of committed and talented people can accomplish. I am so inspired by what you all are doing. Keep up the incredible work!