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. So you’re ready to...| KIF1A
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...| KIF1A
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...| KIF1A
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...| KIF1A
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...| KIF1A
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...| KIF1A
Introducing Interim Director, Angie Fuller| KIF1A
Join the Movement: Genetic Testing Action Day—July 25, 2025 Empowering Families to Start Genetic Join us for the inaugural Genetic Testing Action Day on July 25! In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in... The post Genetic Testing Action Day – July 25th appeared first on KIF1A.| KIF1A
From KIF1A.ORG| KIF1A
