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, and empowering us to achieve our mission with complete urgency and collaboration. 

KIF1A.ORG was welcomed into the first Rare As One cohort in February 2020 and awarded $450,000 to expand organizational capacity and build a collaborative Research Network focused on translation and accelerating the pathway to treatment. In just two years, we’ve grown our staff from one employee to a team of five dedicated professionals, including a Chief Science Officer and a Research Engagement Director. We’ve also grown and continue to power the KIF1A Research Network of scientists, clinicians and biotech leaders. In December 2020, this network included 33 members. Today, over 120 members of the global scientific and medical community are actively engaged as members of our Research Network. With the support of CZI and the Rare As One community, we continue to leverage our network’s innovative skills and experience to advance research and accelerate the pathway to treatment for KIF1A Associated Neurological Disorder.

Together, we’re closing critical gaps in the R&D process by improving our structural understanding of the KIF1A protein; creating an openly accessible biobank of iPSCs for researchers to model KAND; identifying existing drugs; identifying the genotype-phenotype correlation of KAND; and so much more. All of this is powered by a deep integration of voices, stories and experiences from every caregiver and patient. Our community is stronger every day because of you.

With KIF1A.ORG at the center of this network, every scientific endeavor is driven by our urgency to discover treatments and ultimately a cure for this generation of KAND patients. Today, our relentless patient community includes over 400 families from more than 40 countries.

It’s impossible to adequately describe the remarkable transformation KIF1A.ORG has experienced over the last two years. Rare As One is a one-of-a-kind incubator for rare disease patient organizations. In addition to the critical funding to boost our capacity, our team participates in robust, personalized training covering areas such as building a collaborative research network, strategies for drug repurposing, accounting best practices for nonprofits, hiring and human resources, and sustainable fundraising. Along the way, we’re learning from 49 other patient-led, science-driven organizations in the Rare As One Network. The experience, wisdom and support within this network is beyond measure, and we look forward to our continued collaboration to drive science forward, accelerate discovery and serve the community.  

In the next year, we’re eager to solidify all that we’ve been learning over the last two years and launch new initiatives to strengthen our Research Network and the long-term sustainability of our mission. One day, there won’t be a need for KIF1A.ORG to exist. One day, we’ll have treatments and cures for our friends with KAND to live long, healthy lives. Until then, we’ll be here working relentlessly every day to stop the clock, and to change the fate of KAND.


Kathryn Atchley
President, KIF1A.ORG

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