Location: Remote; United States Organization: KIF1A.ORG Reports to: Executive Director Employment Status: Part-time, non-exempt About KIF1A.ORG KIF1A.ORG is a patient-led nonprofit organization dedicated to accelerating research and treatment development for KIF1A-Associated Neurological Disorder (KAND), an ultra-rare and progressive neurodegenerative condition. By fostering a global community of patients, families, scientists, and clinicians, KIF1A.ORG drives collaborative efforts…
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
Join the Movement: Genetic Testing Action Day—July 25, 2025 Empowering Families to Start Genetic Join us for the inaugural Genetic Testing Action Day on July 25! In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in…
Read MorePlease note the following updates to the agenda: Thanks for your flexibility as we make these necessary adjustments!
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
Wearable Digital Data Collection Is On the Horizon: Meet BioSensics KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases. As part of our efforts to…
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
A message from London’s family in New York, USA: London is our beautiful and sassy little 7 year old girl with a BIG personality. London was diagnosed with KIF1A in 2022. It has been a journey and still is but nothing stops London from letting her personality shine. She’s definitely the Queen Bee! London loves…
Read More