By Kathryn Atchley
President, KIF1A.ORG

KIF1A Community,

I’m writing this on the first day of my full-time position as President of KIF1A.ORG. I thank all of the families, friends and everyone who believes in our mission for making this new day possible. Your generosity, encouragement and engagement will fuel the next chapter of progress at KIF1A.ORG.

If you haven’t seen it yet, please read this message from the Leadership Team at KIF1A.ORG to learn about why we made the decision to create a full-time position for our organization. Our first fundraising campaign to create a KIF1A.ORG operations fund isn’t over, but we’ve made incredible progress. To contribute, visit our Facebook fundraiser or make a donation at

Just a few weeks ago, we held the first KAND Family and Scientific Engagement Conference at Columbia University. This two-day conference brought together over 50 families and leading KIF1A researchers and clinicians to exchange ideas and insights on living with KIF1A Associated Neurological Disorder (KAND) and what we need to do to reach our ultimate goal: find treatment. The conference left us feeling “fired up,” “energized” and “optimistic” about the future of the KIF1A community. As impactful as those few days together in New York City were, what’s even more important is what we do next.

Our first order of business in this new chapter of KIF1A.ORG is to create an Action Plan. Modeled after Dr. Wendy Chung’s philosophy of Care Until Cure, this plan will encompass everything from family support, to fundraising and advocacy, to research and clinical care. We have bold, ambitious ideas to improve the lives of those affected by KIF1A and accelerate research to find a cure. But when we take action together, our community is a powerful force. We’ll continue to gather feedback and ideas from the KIF1A.ORG community and work together to develop the path forward. While the plan will continually evolve to keep pace with the latest needs and advancements, our aim is to issue the first Action Plan by the end of 2019.

It has been and continues to be a privilege to work alongside you. If you have any questions, ideas or feedback, you can always reach me at



  1. 1
    Jenee Krug on September 9, 2019

    This is the most exciting thing I have read all day… in many days! Congratulations Kathryn on your new position, the KIF1A family is blessed to have you!

    1. 2
      katatchley on September 9, 2019

      Thank you, Jenee! Looking forward to working with you and Team Nolan!

  2. 3
    Corrine on September 9, 2019

    No better woman for the job, passion, commitment, energy, enthusiasm, inspiration, compassion, the list is endless. Congratulations my little unicorn. I’m so proud to call you my friend. x

    1. 4
      katatchley on September 9, 2019

      Thank you, dear friend! Appreciate the support and encouragement.

  3. 5
    Jenni Fautsko on September 9, 2019

    We are so excited and know you are the exact right person for the job! We are ready to be in action!! Go go go Team Kif1a!!

    1. 6
      katatchley on September 9, 2019

      Ready for action! Yes, Team Turner!

  4. 7
    Avantika Fraser on September 9, 2019

    This is incredible news and we are so lucky to have you leading us forward! Very grateful for you Kat!

    1. 8
      katatchley on September 10, 2019

      Thank you, as always, Avantika!

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