Monthly Momentum header- August 2021
Hello Friends

Meet KIF1A.ORG’s new Treatment Accelerator Program partner, view our latest resources, and get a recap of all things KIF1A in this Monthly Momentum update!

Research Highlights


Please help us welcome the newest partner in our mission to cure KIF1A Associated Neurological Disorder! This collaboration will make significant leaps in our understanding of KAND and drug discovery capabilities. Read more by clicking the button below for more information about what this means for our Treatment Accelerator Program!

“NeuCyte is committed to applying our powerful technology platform and know-how to developing breakthrough therapies for patients. We are honored to be a member of the KIF1A.ORG community and looking forward to contributing our best to understanding and curing KAND.” — Tao Huang, PhD, JD, President and Chief Executive Officer of NeuCyte

Community Highlights

KIF1A.ORG hosted the 2021 KAND Family & Scientific Engagement Conference on July 9 and 10 to share the latest advancements in research and therapeutic development. Thank you to each and every member of our community for powering our progress and making this conference possible. Whether you want to re-watch a session or you weren’t able to join the live conference, you can find our conference agenda, session recordings and presentation slides here. You can also find these presentations on our YouTube Playlist.

Sun Peaks Scavenger Hunt Is a Success!

After organizing an adventurous scavenger hunt at Sun Peaks Resort and multiple online fundraisers, Team Emma rallied their community to raise over $19,000 CAD to accelerate our mission. Thank you to every single organizer and supporter who made Team Emma’s efforts such a success! Want to help keep the momentum going? There’s still time to donate by clicking the button below.

Team Hoyt Does It AGAIN!

Remember last month Hoyt’s Heroes raised $35,018.18 for KIF1A.ORG to accelerate our path to treatment? Well, this month, Team Hoyt hosted another fundraiser raising $33,404! One family. One community. One goal. Together, they raised around $70,000 in record time!

New Resource: Clinical Trials 101

Interested in learning more about the clinical trial process? As our most recent resource for families, we’ve compiled some basic, need-to-know details about clinical trials. Thank you to KIF1A.ORG volunteer, Lindsey Christinger, for leading this effort!

New Resource: Facts About Health Conditions Caused by Changes in the KIF1A Gene

Recently, members of the KIF1A Research Network have teamed up to publish a fact sheet containing information about the possible impact of a variant in the KIF1A gene on your child and family through the NSW Centre for Genetics Education in Australia. This publication is full of wonderfully curated information including information about the KIF1A gene, what a change in the KIF1A gene could mean for an individual, suggestions for symptom management, and more! Additionally, for our Australian families and advocates this publication includes location-specific resources centered around support, advocacy, and care needs. 

KIF1A in the News

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

Gia’s Story

Gia’s memory lives on through her story of relentlessness and strength along with her family’s endless efforts to advocate for other families in need. Gia’s parents recently shared their story to support Phoenix Children’s Hospital. Visit to donate in memory of Gia.

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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