September 2022 Monthly Momentum Header
Hello Friends

As this month comes to an end, we look ahead into the last few months of 2022 with hope, enthusiasm, and drive. You can join us by catching up on our mission-focused and community-driven progress right here in this Monthly Momentum. Also, be sure to mark your calendars for 2023’s in-person KAND Family & Scientific Engagement Conference in New York on August 3-6!

Save the Date!

KIF1A.ORG is thrilled to host the next in-person KAND Family & Scientific Engagement Conference in New York on August 3-6, 2023!

2023 KAND Conference

Are you interested in joining us? Send in this short survey to help us prepare!

Community Highlights

2022 KAND Conference Post Conference Q&A Now Available

We discussed so many important topics and questions during the virtual 2022 KAND Conference in August, but we didn’t have time to address them all. We rounded up unanswered questions and discussed them in a blog post this month. Still have questions? Contact Dr. Dylan Verden, KIF1A.ORG’s Research Engagement Director!

KAND Conference Presentations Now Available!

We enjoyed spending time with our community of families, researchers, clinicians, biotech leaders, and supporters at the virtual 2022 KAND Family & Scientific Engagement Conference! At the conference, we discussed the latest in KAND research and therapeutic development, learned about common KAND symptoms and care considerations, and heard from the experts: KAND patients and families. If you missed a session or want to watch the recordings, you’ll find all the presentations on our website and YouTube playlist.

Swing for the Cure – Emmery Morris Golf Tournament

Thank you to the entire Team Emmery for planning and hosting the Swing for the Cure golf tournament that raised over $27,000 for KIF1A.ORG’s mission. We also send a big thank you to the sponsors and participants of this successful event!

New KAND & Spasticity Resource Page Available for Families & Doctors

One challenge in improving quality of life for patients and loved ones affected by KIF1A Associated Neurological Disorder (KAND) is that there are not always clear-cut answers for symptom management. Spasticity is a common KAND symptom, and while multiple treatments are available, the decision of which to use depends on each individual situation. To help inform your decision, we’ve collected some resources on treatments for spasticity that you can discuss with your doctor when making decisions about care.

Research Highlights

For Families: KIF1A & Ovid Therapeutics Community Call Recording Available

Ovid Therapeutics is collaborating with Chung Lab to create therapies for KAND. We arranged this call to give families the opportunity to connect directly with a few of the stellar scientists from Ovid and ask any questions about their efforts. Did you miss the call? Check out the recording posted on our Private Family Resource Page! If you are a part of our family community and need the password, email us at

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!

Meet the Research Network Interviews

Ahead of the 2022 KAND Conference, KIF1A.ORG interviewed core KIF1A Research Network members to discuss their relentless efforts to understand KIF1A and help KAND patients in this special “Meet the Research Network” series on KIF1A.ORG’s Research Simplified blog. If you haven’t had a chance to watch the interviews yet, we encourage you to catch up on the KIF1A research going on behind the scenes!


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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