KIF1A.ORG is led by a small but mighty community of KIF1A parents and volunteers. Here, you will find opportunities that are currently available to help us advance our mission at KIF1A.ORG. What skills would you like to share with the KIF1A community? If you don’t see anything here, feel free to reach out to us at impact@kif1a.org and we’ll get in touch.
Please note that the estimated time per week for these roles can be subject to your availability and flexibility. If you are interested in volunteering and have more limited time availability, we still encourage you to reach out to us!
KIF1A.ORG hosts a biennial Family and Scientific Engagement Conference in Boston, Massachusetts. This multi-day hybrid event requires extensive coordination, collaboration, and volunteer support to execute successfully. We rely on volunteers at every stage—before, during, and after the conference. If you’re able to contribute your time and skills, please contact us at events@kif1a.org.
Estimated time per week: Time investment will depend on role or project, as well as date proximity to the 2027 Conference. We welcome short and long-term volunteers. We welcome volunteers to aid in event planning as well as supporting at the in person event.
KIF1A.ORG hosts an annual Miles that Matter fundraiser. This month long virtual event requires extensive coordination, collaboration, and volunteer support to execute successfully. We rely on volunteers in many ways—community messaging, platform management, inbox monitoring, social media posting, content development, and more! If you’re able to contribute your time and skills, please contact us at events@kif1a.org.
Estimated time per week: We are seeking volunteers who are able to commit 2-5 hours per week during the event, as well as the month leading up to the event.
We are currently seeking a volunteer administrative assistant to support us with tasks such as calendar management, meeting coordination, record keeping, data entry, and correspondence.
The ideal candidate is someone who communicates effectively, is highly organized, can prioritize tasks, is technically proficient, works well both independently and as part of a team, is proactive, and has a positive attitude.
Estimated time per week: 2-5 hours
The social media volunteer plays a vital role in raising awareness about KIF1A.ORG and KIF1A, engaging our community, and supporting fundraising efforts through social media platforms such as Facebook, Instagram, and LinkedIn.
Key responsibilities include helping to create and manage content, such as educational posts, patient stories, event promotions, and visual content; fostering community engagement through interactive posts and prompt responses; and supporting campaigns and fundraising efforts with updates and calls to action.
The role involves coordinating with KIF1A.ORG leadership and committee members to align social media efforts with organizational goals.
Estimated volunteer time per month: 5 hours
This volunteer role is focused on organizing support group meetups with KIF1A families. To accomplish this the volunteer would plan and schedule the meetups, coordinate with participants, facilitate meeting, selecting topics for discussion, promote meeting, manage logistics like Zoom or power points, gathering feedback, adapting to the communities needs/wants, and following up with participants after the meetups as needed.
This role will be supported by the leadership team, until this volunteer(s) feel able to facilitate this independently.
Estimated time per month: 2-5 hours
KIF1A.ORG is looking for volunteers to join focus groups exploring key topics within our community, such as caregiver experience, research priorities, and family support needs. Participants will share their perspectives in a small-group discussion setting to help guide our programs and initiatives. No special preparation is required—just your honest input and experience within the KIF1A community.
Current areas of focus group interest:
- Variants of Uncertain Significance (VUS)
- Newly diagnosed program revamping
- Caregiver stress, burnout, and support needs
- KIF1A and infection/illness
- Community led mentorship
- Policy priorities important to our community
Estimated time commitment: 1–2 hours per session