Updates From KIF1A.ORG
Happy New Year from all of us at KIF1A.ORG! Our first month of 2026 has been as busy as ever as we look forward to another great year. Thank you for reading as we share what we’ve been up to this month, including:
- Welcoming a new KIF1A.ORG team member
- A community event starting NEXT WEEK
- Reminder for our 2026 clinician survey
- A unique opportunity for Boston and London marathon runners
Welcome Our New Fundraising Coordinator, Erin Zaranec!
We are thrilled to share the news that our team at KIF1A.ORG has grown! For the first time in KIF1A.ORG history, we have hired a dedicated Fundraising Coordinator, aimed to help advance our organization in the areas of fundraising and donor relations, campaign support, and community engagement and events. Read below for more information about Erin’s previous work experience and please join us in welcoming her to KIF1A.ORG!
Erin Zaranec
Fundraising CoordinatorErin@kif1a.orgErin Zaranec has built her career in the nonprofit sector, with a focus on connecting donors to mission-driven work and thoughtfully stewarding their engagement over time. Her experience spans healthcare, economic development, and education-focused organizations, where she has specialized in cultivating meaningful donor relationships rooted in shared interest and values to create long-term impact. Her fundraising experience ranges from in-school philanthropy to coordinating galas, stewarding individual donors, corporate sponsors and grant writing. Erin is known for her ability to understand what motivates supporters, finding their “why, and translating that insight into authentic, mission-aligned partnerships.
Outside of her professional work, Erin is an avid reader and volunteers her time serving individuals experiencing homelessness in her community. Born and raised in Cleveland, Ohio, she currently resides in Tulsa, Oklahoma with her fiancé.
Miles That Matter 2026 Starts Next Week!
⏳ The countdown is ON.
Miles That Matter kicks off February 1 and now is the time to commit, invite others, and show up for those whose bodies don’t give them the same choices.
For the entire month of February, we’re moving together—walking, rolling, pushing, dancing, jogging, or however movement looks for you—to support families affected by KIF1A Associated Neurological Disorder.
🫶 Can’t participate but still want to support our mission? Click the “Donate” button below and help cheer on our participants!
2026 KIF1A Community Clinician Survey Due January 31!
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 and KIF1A-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
🗓️ When is it due?: The survey is open through January 31. Thank you to those who have completed our 2026 KIF1A Community Clinician Survey so far!
🤔 What do I need?: This survey will request information about clinical specialists you see for KAND and KIF1A-related care across a wide variety of symptoms. We recommend compiling the names of specialists and clinics you utilize before beginning the survey.
⏰ How long will it take?: We estimate the survey will take about 60-90 minutes. If your medical records are already collated, this may take significantly less time.
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.
Calling All Boston Marathon or London Marathon Runners!
👀 Did you qualify for the 2026 Boston or London Marathon? Would you like to support the KIF1A community for 26.2 miles?
🤝 We are teaming up with the Boston Children’s Hospital Miles for Miracles program to give KIF1A advocates the opportunity to run with BCH and raise funds and KIF1A awareness at the same time! We are looking to onboard as many interested runners as possible by March 1, 2026.
For more information or to express interest, please email impact@kif1a.org.
Thank You ❤️
This community inspires us every day. Your courage, advocacy, and commitment fuel progress and we are thankful to have you alongside us.
