Category: Monthly Momentum

Welcome to this month’s edition of the KIF1A.ORG newsletter! We have some exciting news to share with you so read on and stay informed! SAVE the DATE! 2025 KAND Family & Scientific Engagement Conference We’re excited to announce the official dates for our 2025 KAND Conference! Mark your calendars for July 25-26, 2025, and plan…

September was packed with informational meetings, grant submissions, global connections with scientists, impact reports, awards, and outstanding community fundraising achievements! Keep reading to discover these amazing milestones and learn how you can get involved to make an IMPACT too! UPCOMING MEETINGS *Times are Eastern Time Zone. MCRI Impact Report In 2020, we provided MCRI and…

Hello, amazing KAND Community! I know I might sound like a broken record, but we have SO MUCH exciting news and information to share this month! Here’s a sneak peek at what’s in store: Let’s dive in and explore all these wonderful updates together! UPCOMING MEETINGS *Times are Eastern Time Zone. ASO therapy: Positive Clinical…

Dear Community, As we step into the middle of the year, we’re filled with a sense of urgency and hope. Our mission to accelerate research and find a cure for KIF1A Associated Neurological Disorder (KAND) remains our guiding light. Right now, we are focused on raising money to begin Phase 2 of our Treatment Accelerator…

April 28th is KIF1A Day! Join us in celebration! Topics include: Donate to our TAP Fundraiser in honor of KIF1A Day. ASCEND Enrollment Lagging We need ALL KAND warriors enrolled ASCEND is our Natural History Study. The goal is to: This is all online. It takes 2-6 hours of your time. Translation is available through…

Call to Action for all KAND families and supporters that live in the US! Today, on Rare Disease Day, let’s all band together to reach out to our state’s Federal Senators and Representatives to ask for funding for rare disease research and for genetic testing to be available to all (without having to fight your…

Bidding Sean Calamia a Farewell! Dear Sean, As you embark on a new chapter in your journey, we want to express our heartfelt gratitude for your unwavering dedication and contributions to KIF1A.ORG and our warriors. Your tireless efforts have made a profound impact on our community, and your passion for supporting KAND patients and families…

New Address! 1178 Broadway, 3rd Floor #3535, New York, New York, 10001 Please send all KIF1A.ORG mail (including donation checks) here! Thank you. November is Epilepsy Awareness Month #GivingTuesday is November 28th~ Clinical Conversations: Speech and Communication in KAND  Sunday, December 3 at 5:00pm EST US Families Survey: Health Policy and Advocacy KIF1A is working…

Dear KAND Community ~ Our team has been busy with a number of different projects we’d like to share with you and some important community updates you need to know about. Thanks for reading and staying connected! KAND Community Member updates In Remembrance: Lyon Hallin Unfortunately, our KAND community lost another warrior last month to…

KIF1A.ORG has a lot to share this month including the 2023 KAND Family & Scientific Engagement Conference registration and hotel room links! Let’s get started!

We’ve got a lot to catch up on and can’t wait to dive right in!