January 2022 Monthly Momentum header
Hello Friends

Happy New Year! We are diving right into 2022 by announcing our newest member of the KIF1A.ORG team! Also, get to know one of our key partners within the KIF1A Research Network and keep up to date with the latest right here in January’s Monthly Momentum update.

Welcome to the KIF1A.ORG Team, Dr. Dylan Verden!

Image has a photo of Dr. Verden smiling in front of a tree and text that says "Welcome to the team, Dr. Verden!"

KIF1A.ORG’s new Research Engagement Director, Dr. Dylan Verden, will be a driving force of KIF1A.ORG’s efforts to engage our diverse community of stakeholders—spanning from patients and caregivers to clinicians and scientists—who are working relentlessly to accelerate the path to treatments for KIF1A Associated Neurological Disorder.

About Dr. Verden

Dylan joined KIF1A.ORG after completing his PhD in Neuroscience at the University of Colorado Medical Campus. Dylan’s research aimed to understand how different cell types in the brain support one another during development and neurodegeneration. In addition to his academic research, Dylan has built a career helping experts explain scientific information to community stakeholders, using intuitive language to enrich science education and policy.

As Research Engagement Director, Dylan acts as a liaison between KIF1A.ORG’s many stakeholders. His goal is to bridge communication between KAND patients and its academic, clinical, and industrial networks to facilitate empathy-driven research and clinical outcomes. Dylan’s passion is based in listening to community needs and finding common language that empowers informed decision-making.

Research Highlights

Community Highlights

End of Year Campaign

At the end of 2021, KIF1A.ORG introduced our first-ever End of Year campaign. Because of your commitment to our mission, KIF1A.ORG’s donors helped us to ring in the new year with over $44,400 raised during the month of December! Thank you to all of our relentless supporters holding us up as we continue our fight for KAND treatment.

Quarterly Community Calls


If you are a patient, parent, family member and/or a caregiver of a loved one with KAND, you are welcome to join us for our quarterly community calls. We will continue to host calls to keep our community up to speed with all the activities and progress we’re making. Our next quarterly update is planned for April. Hope to “see” you there! Also, keep an eye out for other opportunities to connect with the family community outside of our scheduled quarterly calls!

Superhero Spotlights

Thank you to the relentless KIF1A families for sharing your stories to advocate on behalf of the entire KIF1A community!

Colbie’s Story

Colbie’s family shared her story with author, disability advocate and speech pathologist, Macy Gilson Co. The story was recently shared on Macy’s blog. Check it out here!

Once Upon A Gene – Episode 116 – A Dad’s Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen

What happens when you’re diagnosed with cancer while you’re fighting relentlessly to find treatment for your daughter’s neurodegenerative disease?

“I realized if I die, the research isn’t going to stop because we’ve created this community of people who are leaders and relentless and who are going to make sure our kids get treatment and all the weight is not on one person’s shoulders or even two people’s shoulders. It’s this community of caregivers and patients and doctors and scientists and advocates.” – Luke Rosen

To keep up with the progress we’re making thanks to your support, sign up for our monthly newsletter and emails!

Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.

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