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:
- Breaking News: KIF1A Center of Excellence selected at Boston Children’s Hospital
- Our team is growing – would you like to join?
- In Case You Missed It: Q4 Community Call is now available for review
Coming in 2026: KIF1A Center of Excellence!
š£ļø We are beyond thrilled to share the news that Boston Childrenās Hospital will launch a KIF1A Center of Excellence in 2026! This marks the establishment of our first EVER formal center of excellence and is a huge milestone in KIF1A patient care.
š„ The KIF1A Center of Excellence will consist of a specialized group of providers within BCH designed to provide evidence-based and patient-centered care, tailored specifically to the needs of patients with KIF1A mutations. KIF1A patients will be seen by a multi-disciplinary team to provide a broad range of clinical care and assessment, all at BCH.
š” There is still much to figure out about the logistics of how and when this Center of Excellence will function for our KAND community. We will keep our community informed as development of this center progresses. For now we will leave you with a…
ā¼ļø CALL TO ACTION: We will be sending out a survey to get key pieces of information that will help the design of the KIF1A Center of Excellence. The survey will include questions about specialists you are seeing, specialists you want to see, travel feasibility, etc. Keep your eyes on your inboxes as we will be sending this survey soon!
Now Hiring: Part-Time Fundraising Coordinator!
š± KIF1A.ORG is growing! We are seeking a mission-driven Part-Time Fundraising Coordinator to execute the organizationās fundraising strategy, donor relations, and community engagement initiatives. The ideal candidate will be passionate about rare disease advocacy, skilled in donor communications, and eager to help grow the organizationās impact.
ā¤ļø KIF1A.ORG is at the forefront of patient-led rare disease innovation, uniting a passionate community to drive change. This role offers the unique opportunity to lead a mission-driven organization, accelerate groundbreaking research, and make a lasting impact on the lives of those affected by KAND.
š We are now receiving applications for this role. For a full job description, please click the button below. If interested please send us an email with your resume and a brief cover letter to impact@kif1a.org.
4th Quarter of 2025 Community Call Recording Now Available
š«¶ Thank you to all who joined our last community call of 2025 where we discussed:
- Emerging opportunities for our community members starting in 2026
- Insights into KIF1A.ORG five-year strategic plan development
- Many other powerful and meaningful topics from our KAND community members
š„ If you weren’t able to join us, have no fear. Our 4th Quarter of 2025 Community Call is available on our Private Family Resource page for viewing. If you don’t have access to this page, please email impact@kif1a.org.
Thank You ā¤ļø
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
