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:
- Our first EVER KIF1A.ORG Virtual Hill Days
- KIF1A community connections at the n-Lorem 2025 Nano-Rare Patient Colloquium
- Our upcoming Community Call focused on 2026 planning
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 legislators. In this event, we achieved our three main goals:
- Connect KIF1A families and advocates with their local legislative offices to amplify our voices
- Meet with members of Congress and their staff to advocate for KIF1A specific policy issues, such as the MINI Act and the Accelerating Kids Timely Access to Care process
- Welcome legislators into our world through the power of story telling and sharing perspectives from the KIF1A community
This event is one of the many ways in which we aim to center KIF1A voices in healthcare policy spaces. THANK YOU to all of the families and advocates who participated in our event and shared their stories.
To learn more about our ongoing efforts, please visit our website [LINK]. A special thank you to Novartis for your support and dedication to our KIF1A community through your event sponsorship.
KIF1A at the n-Lorem 2025 Nano-Rare Patient Colloquium
We were thrilled to see so many familiar faces in Boston this month at the n-Lorem 2025 Nano-Rare Patient Colloquium. What did we learn?
- We received updates on the progress of KIF1A warriors currently undergoing n-Lorem ASO treatment
- Met with familiar and new stakeholders in nano-rare therapeutic development spaces
- Connected with KIF1A patients and families who traveled to the event from all over the US!
As an overarching theme, we deeply value the prioritization of patient safety in experimental medicine that n-Lorem brings to the patients they serve. We’re so proud of our KIF1A pioneers and grateful to n-Lorem for paving the way.
Upcoming Community Call: Thursday, November 13 at 12:30pm ET
Our next community call is all about planning for 2026. During this session, we’ll:
✔ Discuss emerging opportunities for our community members starting in 2026
✔ Share insights into KIF1A.ORG five-year strategic plan development
✔ Answer your questions and have an open conversation with Dom and Dylan
Register for the call here → [Link]
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
