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
Introducing Interim Director, Angie Fuller| KIF1A
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. You can find all of the presentation recordings and slides on our 2022 KAND Conference webpage. Do you still have...| KIF1A
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...| KIF1A
From KIF1A.ORG| KIF1A
Wearable Digital Data Collection Is On the Horizon: Meet BioSensics KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases. As part of our efforts to...| KIF1A
