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Hello Friends

Yes, it’s that time of the month already! It’s hard to believe almost a month has passed since we had the opportunity to “see” so many of our friends at the KAND Conference. Great updates then, and more updates now! Scroll on to see the latest!

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.

Treatment Accelerator Program (TAP) Update

During the month of May, our community raised $100,000+ USD to launch TAP in less than a month to expedite our search for treatments for our KIF1A superheroes. Since then, we have reviewed proposals from multiple contract research organizations to perform this work and are excited to update our community on the progress since. If you need a refresher on TAP, check out What’s On Tap With Tap?. We also encourage you to watch Dr. Dominique’s Lessard TAP update from the 2021 KAND Conference to learn more about our latest progress. We’re so close to announcing our first TAP partner. Stay tuned!

Research Highlights

Community Highlights

Local Fundraiser Raises $35,000+

Hoyt’s Heroes raised $35,018.18 for KIF1A.ORG to accelerate our path to treatment!!! Between a 5K, silent auction, tiny hero dash and street dance, Team Hoyt hosted a fun-filled fundraiser to help us create a brighter future for Hoyt and KIF1A superheroes everywhere! You still have time to donate to their Facebook fundraiser!

If you’re in Minnesota, mark your calendar for Heroes Unite Maple Lake to be held August 7th! Visit their event page to learn more.

Teaching Friendship and Inclusion

Every day is an opportunity to teach others how to be a friend to our KIF1A superheroes and others like them. Read how one very special person in the life of Sadie made a lifelong impact on an entire school.

Sadie in her adaptive stroller in her classroom with her arms in their air and a smile on her face

Farewell, Aileen!

Please help us share thanks and best wishes to Aileen Lam, Science Communication Associate of KIF1A.ORG, as she leaves this position to start med school at Western University of Health Sciences! Aileen is interested in becoming a child neurologist to continue her work with rare diseases like KAND. Wherever she heads, Aileen will always be part of the KIF1A.ORG family. Thanks for all you do, Aileen!

Aileen and her dog pose for a photo with matching KIF1A.ORG tops

KIF1A in the News

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

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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