Hi KIF1A Families, Sloane received her forth ASO dose in October at 80mg. This dosing consisted of pre-dose bloodwork, research EEG, PT evaluation, and a cognitive evaluation. The biggest changes we have seen so far have been in her speech and cognitive awareness. She recently started counting to 10 on her own! We are noticing slightly…
Read MoreKIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.
Giving Tuesday: December 3, 2024
Giving Tuesday is a global movement that encourages generosity and giving back to your community. It takes place every year on the Tuesday following Thanksgiving in the United States.
This year, we need your support to keep our mission thriving: to accelerate research and find a treatment and cure for KAND, bringing hope to this generation of patients and their families.
Our goal is to raise $30,000! To help us get there, a generous donor has pledged to match every dollar up to $10,000—doubling the impact of your gift!
With your support, we can make a real difference. 💙
Upcoming Events
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KIF1A.ORG Dylan Verden Office Hours – Neuropathic Pain
Join KIF1A.ORG’s chief science officer Dylan Verden for an open discussion of anything relating to KIF1A and KAND. We are also interested in hearing from…
Tuesday, December 10, 2024 2:00 pm – 3:00 pm https://us06web.zoom.us/j/87480645503 -
Newly Diagnosed Meetup
These 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,…
Wednesday, January 22, 2025 1:00 pm – 2:30 pm Online via Zoom -
KOALA Study prior to KAND Conference
The KOALA study will be available to an estimated 40 KAND patients in the days leading up to the conference, on July 22, 23, and…
Tuesday, July 22, 2025 – Thursday, July 24, 2025 In-person
Boston, Massachusetts, USA
Our Impact
On the Blog
Rafaela’s Superhero Story
“Su risa contagia de alegría en su alrededor. (Her laughter spreads joy all around her.)”
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