February 2024

February 2024

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…

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January 2024

January 2024

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…

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November 2023 Highlights

November 2023 Highlights

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…

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October 2023 Highlights

October 2023 Highlights

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…

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April 2023 Highlights

April 2023 Highlights

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!

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October 2022 Highlights

October 2022 Highlights

We’re glad you’re back for another month of KIF1A.ORG announcements! Please mark your calendars for some very important dates! Read this Monthly Momentum update to learn about the upcoming #GivingTuesday movement, our in-person KAND Conference planned for 2023, and how KIF1A data is being used to advance rare disease treatments in an FDA-funded program.

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September 2022 Highlights

September 2022 Highlights

As this month comes to an end, we look ahead into the last few months of 2022 with hope, enthusiasm, and drive. You can join us by catching up on our mission-focused and community-driven progress right here in this Monthly Momentum. Also, be sure to mark your calendars for 2023’s in-person KAND Family & Scientific…

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August 2022 Highlights

August 2022 Highlights

This month we gathered our community at the 2022 KAND Family & Scientific Engagement Conference to share updates, connect, and learn from one another. In August’s Monthly Momentum newsletter, catch up on conference presentations, meet core members of the KIF1A Research Network, and learn about new resources and opportunities with KIF1A.ORG!

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July 2022 Highlights

July 2022 Highlights

It’s not too late! Register today for KIF1A.ORG’s virtual 2022 KAND Family & Scientific Engagement Conference. You can also view our latest resources and get a recap of all things KIF1A right here in this Monthly Momentum update!

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June 2022 Highlights

June 2022 Highlights

Registration for the virtual 2022 KAND Family & Scientific Engagement Conference is now open! We invite you to join in on the excitement by ordering your conference t-shirt and exploring this month’s highlights to learn about the conference agenda and how to register, as well as other important reminders. 

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