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:
- NEW survey from KIF1A.ORG for patient and family community
- Calling all adults recently diagnosed with KIF1A mutations
- Miles that Matter 2026 merchandise is now available
- Save the date: 2026 community events now on our website
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 the clinical specialists they see for KAND-related care, so we can:
- Compile a list of KIF1A-experienced clinical specialists
- Identify unmet needs in clinical care and barriers to access
- Inform the creation of a KIF1A Center of Excellence at Boston Children’s Hospital
To learn more about the “why” behind this survey, please watch the video above featuring KIF1A.ORG Chief Science Officer, Dr. Dylan Verden. For any additional questions, please email impact@kif1a.org.
Adult with KIF1A mutation? Newly Diagnosed? Let’s Connect!
Are you an adult who recently received a genetic report with a KIF1A mutation? Are you a newly diagnosed adult and looking to connect with others in a similar situation? In 2026, we would like to hold an informal virtual meet up for Newly Diagnosed Adults with KIF1A Mutations. Here we aim to listen and learn from each other, connected by the shared experience of being a newly diagnosed adult. Want to learn more or express your interest in attending? Please email impact@kif1a.org!
Miles that Matter 2026 Merchandise is Now Available!
As 2025 comes to a close, New Year’s resolutions are just around the corner! If your 2026 resolution is to move your body, we invite you to join our community and register for our 2026 Miles that Matter Challenge.
What’s the challenge? To complete 28 miles in 28 days. You can participate from anywhere and complete the 28 miles in any way that works for you! Whether you are walking, rolling, swimming, or strolling, we invite you to join our effort to accumulate miles that truly matter for our KAND community. All are welcome!
Ready to represent? Our NEW 2026 Miles that Matter merchandise is ready for purchase! Click the link below to browse and shop!
Save the Date(s): Community Virtual Events for 2026
Our 2026 Newly Diagnosed Meet Up and Community Call events are now listed on our Upcoming Events page! Head on over to take a look and register for the meetings of interest to you – we can’t wait to connect with you in 2026!
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
