Every April 28th, we come together to honor our community on KIF1A Day—a day to celebrate our incredible patients and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure.
✈️ Please join us this KIF1A Day, as we raise money to help KAND families get to Boston!
This summer, families affected by KAND will travel from around the world to attend the KIF1A.ORG Family & Scientific Conference in Boston. For many, the cost of travel is a major obstacle—and that’s where you can step in and DONATE!
💚 April 28, 2025: KIF1A Day Every April 28th, we come together to honor our community on KIF1A Day—a day to celebrate our incredible patients and raise…
Monday, April 28, 2025 12:01 am – 11:59 pm GloballyJoin us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…
Wednesday, May 14, 2025 1:00 pm – 2:30 pm Eastern Standard TimeThese gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…
Thursday, May 15, 2025 12:30 pm – 2:00 pm Eastern Time Zone
A message from Athena’s family in California, USA: Athena is 6 years old. She was diagnosed at the age of 5 when I requested genetic testing for her after speaking to her orthopedic surgeon. We kept thinking we were missing something. Something wasn’t adding up. Her ortho doctor and I decided that we should speak…
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KIF1A.ORG Newsletter – April 2025 Welcome Our New Executive Director, Dominique Lessard, Ph.D.! I’m thrilled to share exciting news about the leadership at KIF1A.ORG. Beginning April 14th, Dominique Lessard will officially step into the role of Executive Director, replacing myself, Angie Fuller. Dominique has been a dedicated force within our organization as our previous Chief…
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