Join our team to make a difference in people’s lives.

This year will be a pivotal year for The SPSRF. In late 2021 we received a game-changing grant from the Chan Zuckerberg Initiative "Rare as One" program. This amazing support will allow us to build our organization in untold ways.

Our mission is to raise awareness and funds for research to find better treatments and a cure for Stiff Person Syndrome, which is a rare neurological disease, with no good treatments and no cure. We are connecting the SPS community around the world, showcasing patient stories, supporting science, and advocating for greater understanding of the causes of auto-immune disease.

We are seeking a part-time volunteer or paid contractor to serve as Development Manager for approximately 15-20 hours per week. This role will support The SPSRF in building a fundraising structure with the Board of Directors, volunteers, and staff.

Development Manager: Part-time volunteer or paid contract 15-20 hours/week

Fully Remote

Start Date: ASAP

Responsibilities of the Development Manager include:

Manage fundraising for The SPSRF, including special events, peer to peer fundraising, grants, and individual donor programs.
Serve as point person for The SPSRF fundraising team, managing a staff grant writer, volunteer workers, and Board member support. Work closely with Founder and CEO to communicate with team members to achieve ambitious fundraising goals.
Direct organizational fundraising campaigns and special events fundraisers. Including manage relationships with potential hosts/sponsors, plan and execute online and in-person events, and evaluate the success of previous fundraising events.
Create and implement an individual donor prospecting, cultivation, solicitation, stewardship plan including drafting appeals and proposal strategies, coordinating on-line messaging, thank-you letters, and other donor-related outreach.
Organize biweekly fundraising meetings with The SPSRF staff/volunteers to review upcoming deadlines and plan appeals, campaigns, proposals, and reports.
Report to The SPSRF Board of Directors as requested by the Founder and CEO.
Attendance at and participation in other The SPSRF meetings, as requested by the Founder and CEO.
Work closely with Web Manager to maintain CRM for donor tracking and cultivation.
Oversee timely and comprehensive acknowledgement process for all donor gifts.
This position reports to the Founder and CEO of The SPSRF.