Updates From KIF1A.ORG Happy Rare Disease Day from all of us at KIF1A.ORG! Today, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is building!…
Read More
Updates From KIF1A.ORG Happy New Year from all of us at KIF1A.ORG! Our first month of 2026 has been as busy as ever as we look forward to another great year. Thank you for reading as we share what we’ve been up to this month, including: Welcome Our New Fundraising Coordinator, Erin Zaranec! We are…
Read More
Updates from KIF1A.ORG What have we been working on during the last month of 2025? Read on below to learn more about what’s been happening at KIF1A.ORG: 2026 KIF1A Community Clinician Survey is LIVE! We are excited to launch our new 2026 KIF1A Community Clinician Survey! This survey is for families to provide information on…
Read More
Updates from KIF1A.ORG November 2025 is almost done and we have a lot to be thankful for, as always! Read on below to learn more about what’s been happening at KIF1A.ORG: Coming in 2026: KIF1A Center of Excellence! 🗣️ We are beyond thrilled to share the news that Boston Children’s Hospital will launch a KIF1A…
Read More
Updates from KIF1A.ORG Another month of 2025 has flown by before our eyes! What have we been up to? Read on below to learn more about: KIF1A Virtual Hill Days Were A Success! Last week, we launched our inaugural KIF1A Virtual Hill Days event by bringing patient perspectives directly to the hearts of United States…
Read More
Updates from KIF1A.ORG While summer may be winding down in the Northern hemisphere, we are revving up to finish out 2025. Read on below to learn more about: KIF1A Virtual Hill Day – Advocacy Opportunity for KIF1A Community! We are seeking US-based volunteers interested in participating in a virtual “KIF1A hill day” during the week…
Read More
Updates from KIF1A.ORG July was an unforgettable month for the KIF1A.ORG community! We had an incredible time connecting, learning, and growing together at the 2025 KAND Family & Scientific Engagement Conference. Thank you to every family, researcher, clinician, and supporter who made this event such a success. If you couldn’t join us—or if you just…
Read More
Dear KIF1A.ORG Community, As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission…
Read More
KIF1A.ORG Newsletter – May 2025 Dear KIF1A.ORG Community, It has been almost four weeks since I started assimilating into the role of KIF1A.ORG’s new Executive Director and, WOW, what a four weeks it has been. From connecting with community members, to learning about our ongoing and upcoming projects, I am filled with excitement about everything…
Read More
KIF1A.ORG Newsletter – April 2025 Welcome Our New Executive Director, Dominique Lessard, Ph.D.! I’m thrilled to share exciting news about the leadership at KIF1A.ORG. Beginning April 14th, Dominique Lessard will officially step into the role of Executive Director, replacing myself, Angie Fuller. Dominique has been a dedicated force within our organization as our previous Chief…
Read More
Dear KIF1A.ORG Community, This Friday, February 28th, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is truly inspiring! Our Miles that Matter for…
Read More