Category: From KIF1A.ORG

Dear KAND Community! We are thrilled to announce the recent publication of two KAND Natural History Study articles! We invite everyone to read the articles and learn about the latest data on KAND symptoms. We sincerely thank all the participants and researchers whose contributions have been crucial in reaching these advancements in KAND knowledge and…

Reflecting on a Remarkable Year: KIF1A.ORG’s 2023 Annual Report Dear KAND Community, Let’s take a moment to reflect on the incredible journey we’ve shared in 2023. It was a year filled with challenges, triumphs, and moments of growth that have shaped the very fabric of our organization. In our Year in Review, we invite you…

What a year! As families, scientists, doctors and our friends around the world navigated the challenges of 2022, the KIF1A.ORG community worked together to reach new heights. As this community grows, so does our army of advocates and supporters. We are so excited to highlight our proudest achievements and what refuels and restores our drive…

What do worms, a classroom full of students, and members of the KAND family community have in common? A lot more than you’d think! In this blog post, KIF1A.ORG Chief Science Officer Dr. Dominique Lessard describes a unique cross disciplinary experience with multiple scientific stakeholders in the rare disease space, all focused around our holistic…

Hello KAND Community! We are excited to announce KAND family member, Angie Fuller, has been appointed as Interim Director of KIF1A.ORG. Many of you know Angie as an active member of the community. In her role Angie will be responsible for coordinating, communicating, and fostering a cohesive, informed, and positive community; working with community Facebook page administrators; supporting…

Hello KIF1A.ORG Community, Want to know what’s more valuable than money? Data. In rare diseases, data are inherently difficult to collect and analyze. But we rely on data to inform everything from creating better care guidelines to discovering treatments and cures. We can’t treat what we don’t know. Which symptoms do patients experience, and why…

You asked so many great questions at our 2022 KAND Family & Scientific Engagement Conference. While we didn’t have time to address every question at the conference, we’ve compiled our answers here for your convenience.

Whether you’re planning a trip to New York City to participate in the KOALA Study at Columbia University or you’re going on vacation, traveling can be a daunting process. In this guest blog post, Charisma Freeman—mother to KIF1A superhero Cam, author, care coach, and more—shares her tips on traveling with disabilities.

Dear KIF1A Community, Equipment deemed medically necessary should never be inaccessible for our friends diagnosed with KIF1A Associated Neurological Disorder (KAND). Thanks to a generous donation made directly to support the creation of this much needed program, KIF1A.ORG can now provide additional support and extend a helping hand to those diagnosed with KAND. What Can…

Dear KIF1A.ORG community, On Rare Disease Day 2022, KIF1A.ORG is announcing a new initiative with our collaborators at Columbia University. The KOALA Study will accelerate discovery and development of medicines for KIF1A Associated Neurological Disorder by developing and identifying standardized tools and assessments to support approval of future KAND therapeutics. Since 2017, we have been…

Hello KIF1A.ORG Community, We’re starting Rare Disease Month with fantastic news! The Chan Zuckerberg Initiative (CZI) awarded KIF1A.ORG an additional $150,000 in capacity-building funds and the critical opportunity to engage with the Rare As One Network for one more year! Thank you CZI for partnering with the KIF1A community by including us, investing in us,…