By Kathryn Atchley
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 kif1a.org/donate.
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 email@example.com.