Hello KAND Community!

We are excited to announce KAND family member, Angie Fuller, has been appointed as Interim Director of KIF1A.ORG. Many of you know Angie as an active member of the community. In her role Angie will be responsible for coordinating, communicating, and fostering a cohesive, informed, and positive community; working with community Facebook page administrators; supporting the KIF1A 2023 conference planning team; coordinating social media strategies; answering community questions; relaying organization updates to the community; directing scientific questions to the appropriate people, and many other activities. To view Angie’s bio and learn more about her community leadership and vast experience, visit the team page. Angie’s new email address is: angie@kif1a.org.

There is no longer any need for a “Transition Team” as KIF1A.ORG continues to have (and always has had) a strong staff and team hard at work for every family. While there has been some changeover in staff, and separately, the Board of Directors, that change is exciting and will drive our organization to the next level of discovery, impact, and presence within the rare disease community. Our mission continues as it has from day one: to move forward urgently with one goal: discover and develop treatments for patients and families affected by KIF1A Associated Neurological Disorders. We encourage the community to recognize the importance of being united, loving, and actively participating. We are excited to welcome Angie as a key member of the KIF1A.ORG staff, and are thankful for her to help power us all for success in 2023 through supportive and forward-thinking community engagement.

A note about the new, incoming Board of Directors: staff and volunteers have been working diligently to develop a list of potential new board members, and already have one member who has accepted the founder-appointed role. He is a leader in the community, and we are fortunate to have him join the BoD. The staff looks forward to announcing the new board when formed in its entirety. For efficiency, we won’t be announcing each board member as they are elected. We will announce the new board as a whole body in one announcement. We hope to announce the new Board of Directors in May or June. To identify, nominate, interview, and elect members of any Board of Directors is an important process that takes time, energy, and thought. Thank you for your patience as we conduct this diligence and take KIF1A.ORG to the next level of community-driven strategy. KIF1A.ORG staff will be electing nominated individuals. Please reach out to Angie if you would like to nominate an individual or learn more.

A note about keeping current on research, education and community activities: the website is our primary source for all things research-related and participation, including the KOALA Study at Columbia University. 2023 Conference links and donation links are all easy to find, and weekly announcements from our science team are updated regularly, as is all literature related to KIF1A, a glossary of terms, and frequently asked questions for you to understand both the disease, and the many therapeutic endeavors we are working on around the clock to move mountains for every family. Many thanks to a stellar team of seasoned researchers and scientific leaders helmed by our Chief Science Officer, Dr. Dominique Lessard. 

Impact: For general inquiries, fundraiser ideas, points of contact, or just to say hi, email: impact@kif1a.org. We’re always here to help navigate life with KAND.

The Facebook family group is a great way to discuss community challenges and strategies that families have found helpful in living with KAND. Connecting with others and fostering a loving, active community is our heart and soul, and Angie is a key addition as we power our united community.

For those new to the community, just diagnosed, or not familiar with the current KIF1A.ORG staff and volunteer leadership, please see the dedicated staff working around the clock for every family below: 

Staff and Volunteers

  • Emeritus Advisor, and Co-Founder: Luke Rosen
  • Chief Science Officer: Dominique Lessard, Ph.D.
  • Research Engagement Director: Dylan Verden, Ph.D.
  • Therapeutic Development Director: Michelle Tao
  • Interim Director: Angie Fuller
  • Executive Directors of KIF1A.ORG Spain: Alejandro Doval and Maribel Saez, M.D.
  • Community Advisor and Facebook Administrator: Rickard Lundqvist (SE)
  • Community Advisor: Gary Boyer (AU)
  • Accounting Contact: accounting@kif1a.org
  • Facebook Administrator: Raine Collihole-Isaacs (AU)
  • Facebook Administrator: Cassie Schultz Gluck (US)
  • Facebook Administrator: Sally Blaxall (UK)

A very warm welcome to our new Interim Director, Angie Fuller!

Stay Relentless,



  1. 1
    Conchi Cano on February 20, 2023

    Todos juntos somos más fuertes.
    Muchas gracias a todos. Saludos.
    Bienvenida Angie.🫂

Leave a Reply

Your email address will not be published. Required fields are marked *