Happy July from the KIF1A.ORG team! Thank you all for reading about what we’ve been up to this month, including:
- Save the Date: Our Family and Scientific Engagement Conference is BACK!
- 60 Second Science: Defining the Movement Spectrum of KIF1A-Associated Neurological Disorder
- Honoring the Life of Ada: Ad astra infinitum, Ada amata.
- Measuring the Impact of Patient-Centered Research
- Upcoming Community Events
📅 SAVE THE DATE: 2027 KIF1A Family and Scientific Engagement Conference
We’re heading back to Boston for the 2027 KIF1A Family & Scientific Engagement Conference, taking place July 22–24, 2027, at the Sheraton Boston Hotel!
Join KIF1A families, researchers, clinicians, industry partners, and advocates from around the world as we celebrate 10 years of KIF1A.ORG: a decade of community, collaboration, and progress.
Additional information will be shared in the coming months, including: registration, KOALA appointment scheduling, hotel information, conference agenda, and more. We can’t wait to see you in Boston! 💙
60 Second Science: Defining the Movement Spectrum of KIF1A-Associated Neurological Disorder
📖 A new study published in Movement Disorders provides one of the most comprehensive characterizations of motor and movement disorders in KIF1A-associated neurological disorder (KAND). By evaluating 51 individuals with KAND, researchers demonstrate that KAND exists along a continuous clinical spectrum, with evolving motor features that have important implications for diagnosis, clinical management, and the design of future therapeutic trials.
👀 Watch our latest 60 Second Science video for a quick overview, and explore the full publication to learn more!
💙 This important work would not have been possible without the participation, trust, and ongoing engagement of our KIF1A community. We are deeply grateful to every individual and family who contributed to this research. Your partnership is helping advance our understanding of KAND and bringing us closer to better care and future treatments – thank you.
Announcement of the Center for Therapeutic Genetics
We’re excited to celebrate the launch of the Center for Therapeutic Genetics (CTG), a groundbreaking collaboration between Boston Children’s Hospital, the Broad Institute of MIT and Harvard, and The Jackson Laboratory. As trusted partners of KIF1A.ORG, Boston Children’s Hospital, the Broad Institute, and The Jackson Laboratory continue to demonstrate the power of collaboration. We look forward to the advances this partnership will bring to individuals and families affected by rare diseases. 💙
We Remember Ada
It is with the heaviest of hearts that we share the news of the passing of another brave KAND warrior, Ada, from the United States. Ada had the KIF1A variant E253K, and passed away at just 2 years old. Our hearts are with her loving parents, Sarah and Anthony, Ada’s siblings, and the rest of Ada’s loved ones as we grieve alongside them and honor Ada’s memory. We encourage you to click the link below and read the beautifully written tribute, honoring the memory of Ada.
Ad astra infinitum, Ada amata.
Into the stars forever, beloved Ada.
Understanding Impact at MCRI: Why Patient-Centered Research Matters
How can we measure the significance of patient-centered research? A new impact report from Dr. Simran Kaur and the team at Murdoch Children’s Research Institute highlights how partnering with the KAND community has shaped meaningful research: from studies on communication and lived experiences, to stronger advocacy and science communication. Importantly, this impact report also looks ahead, outlining a continued commitment to involving people with lived experience at every stage of the research process.
We are deeply grateful to Dr. Kaur and her team for their relentless commitment to the KIF1A community over the years. Their dedication to partnering with families and advancing research continues to make a meaningful difference for everyone affected by KIF1A and KAND. Click the link below to learn how collaboration between researchers and families is laying the foundation for a brighter future for KAND research.
Upcoming Events
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Aug 13
Newly Diagnosed Meetup
These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…
Thursday, August 13, 2026 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom -
Aug 19
3rd Quarter Community Call, KIF1A.ORG
Join us for a guided panel discussion exploring the interaction between KIF1A and mood, behavior, and emotion. Our panel of speakers will share perspectives and…
Wednesday, August 19, 2026 3:30 pm – 4:30 pm Eastern Time Zone
Online via Zoom
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
