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Hello Friends

It’s not too late! Register today for KIF1A.ORG’s virtual 2022 KAND Family & Scientific Engagement Conference. You can also view our latest resources and get a recap of all things KIF1A right here in this Monthly Momentum update!

Register Now: KAND Conference on August 13, 2022

There is still time to register for our KAND Family & Scientific Engagement Conference on August 13th. We have many opportunities available to hear updates from our partners and collaborators as well as connect with the family, scientific, and clinical communities! Click the button below to register for the event.

Highlights from the conference agenda include:

  • Updates and Q&A session with KAND expert Dr. Wendy Chung (bring your questions!)
  • What patients and families need to know about spasticity and KAND
  • Updates from our therapeutic development partners, including NeuCyte, Christodoulou and Gold Labs in Australia, and Ovid Therapeutics
  • Unique opportunities to learn from and connect with patients and families impacted by KAND

Community Highlights

Fundraising Highlights

Heroes Unite: Punching Out a Cure

Hoyt’s Heroes helped raise over $10,325 for KIF1A.ORG with their latest event! Thank you to all of the volunteers and supporters for your relentless dedication to KIF1A superheroes everywhere.

Visit to the Lab!

KIF1A Superhero Turner visited the BioLoomics team at their lab in Boulder, Colorado. They went on a tour of the lab and met the team behind the amazing work being done to change the fate of KAND. Thank you for being in this fight with us! Learn more about the incredible team at BioLoomics and our joint effort to find KAND treatments here.

KIF1A In The News

Team Emmery shares their diagnosis story with All Things Madison and offers more insight on how the fundraiser they’re planning in September will benefit KIF1A.ORG’s mission. Thank you to everyone involved!

In Case Your Missed It

We’ve had a lot of announcements over the last couple months! If you’re new to the community or need to catch up on all things KIF1A, we’re here to help.

Introducing the League of Sidekicks

Every superhero needs a sidekick! Our new League of Sidekicks appreciation wall has been unveiled! Members of the League of Sidekicks are monthly donors to KIF1A.ORG showing their relentless support for our superheroes. On behalf of the entire KIF1A community, thank you.

NEW RESOURCE: One Stop Shop for Family Resources Now Available!

As part of KIF1A.ORG’s mission to help improve the lives of those affected by KAND, this private resource page is now available to KAND patients, parents, families, and caregivers in their search for KAND-related information and resources. Here you can also find recaps of community calls, recordings of important community meetings, and so much more! This is a password-protected page. Learn more in the KIF1A Family Support Group or email

Do You Need Help with Medical Equipment?

Equipment deemed medically necessary should never be inaccessible for our friends diagnosed with KIF1A Associated Neurological Disorder (KAND). Our newest initiative, Helping Hand for KAND, provides additional support and extends a helping hand by reducing financial stress on families affected by KAND. In case you missed it, check out our March blog announcement for more details about this exciting program!

Research Highlights

Columbia University Now Enrolling Patients in the KOALA Study

KIF1A.ORG and members of the KIF1A Research Network from around the world are working relentlessly to discover treatments and cures for KIF1A Associated Neurological Disorder. As potential therapeutics are being explored in pre-clinical studies every day, our KAND community must get ready for the world’s first clinical trials for KAND treatments.

The KOALA Study is an opportunity for patients and families to advance KAND research, and get us closer to treatment, by participating in clinical assessments at Columbia University Irving Medical Center in New York City. The KOALA Study (KIF1A Outcome measures, Assessments, Longitudinal And endpoints Study) is led by Principal Investigator Dr. Wendy Chung and a team of specialists who will perform standardized assessments with KAND patients to understand how KAND symptoms develop and change over time. 

Visit our KOALA Study page to learn more about the study, how to enroll, and how KIF1A.ORG can support your family’s travel to New York City to take part in KAND research!


Every week, we see advancements in KIF1A research and therapeutic development for rare and neurodegenerative disorders, and we want you to stay informed. If you’ve been behind on our weekly #ScienceSaturday, it’s a good time to catch up. What topics are you interested in learning more about? Sending us an email at to suggest articles or content!

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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