Category: From KIF1A.ORG

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,…

Dear KIF1A.ORG Community, Small roadblocks should never halt therapeutic discovery. That’s why we created KIF1A.ORG’s Mini Grant initiative to support smaller direct project expenses that can accelerate our path to treatments for KIF1A Associated Neurological Disorder. In 2021, we awarded three mini grants for the following novel projects led by members of our Research Network. Learn…

Dear KIF1A.ORG Community, Please help me extend a warm welcome to Dr. Dylan Verden, KIF1A.ORG’s new Research Engagement Director! Dr. Verden will be a driving force of KIF1A.ORG’s efforts to engage our diverse community of stakeholders—spanning from patients and caregivers to clinicians and scientists—who are working relentlessly to accelerate the path to treatments for KIF1A…

What a year! As families, scientists, doctors and our friends around the world navigated the challenges of 2021, the KIF1A.ORG community worked together to reach new heights this year. We are so excited to highlight our proudest achievements in 2021 and what refuels and restores our drive for 2022. Together, we’re going to change the…

We are thrilled to announce the launch of KIF1A.ES, a member of the KIF1A.ORG family in our mission to improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. KIF1A.ES, or Associación KIF1A España, is a proud part of the KIF1A.ORG community that will help drive collaboration,…

Are you ready for this month’s recap and a sneak peek look into what’s happening next for the KIF1A.ORG community? Get the latest RIGHT HERE in this Monthly Momentum update.

Dear KIF1A.ORG community,   The last time I wrote a blog post about expanding the team at KIF1A.ORG, I talked about the remarkable growth our community had generated. We needed to build KIF1A.ORG’s capacity to keep that momentum moving forward. A year later, this is even more true today.  

Meet KIF1A.ORG’s new Treatment Accelerator Program partner, view our latest resources, and get a recap of all things KIF1A in this Monthly Momentum update!

KIF1A.ORG Community, Earlier this week, we announced NeuCyte as the first partner of KIF1A.ORG’s Treatment Accelerator Program to fast-track therapeutic discovery for KIF1A Associated Neurological Disorder (KAND). This collaboration will make significant leaps in our understanding of KAND and drug discovery capabilities. Because the KIF1A.ORG community rallied to fund this initiative, we’re able to make…

Yes, it’s that time of the month already! It’s hard to believe almost a month has passed since we had the opportunity to “see” so many of our friends at the KAND Conference. Great updates then, and more updates now! Scroll on to see the latest!