Join Our Mission

Join our team to make a difference in people’s lives in 2022.

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.

Grants Writer and Manager : Volunteer/Part-time Contractor

Fully Remote   |   15-20 Hours/Week   |   Start Date: ASAP

Role Responsibilities

  • Maintain The SPSRF annual grants calendar, including all grant proposals and reporting deadlines for existing and prospective funders.
  • Conduct monthly grants research and prospecting to identify new funding opportunities and present these opportunities to The SPSRF leadership for review and consideration, including corporate sponsorship/funding opportunities.
  • Preparation (strategizing, outlining, writing, and compiling proposal content) and submission of all grant proposals and reports identified in the grants calendar, including all required attachments and budgets. Circulate draft materials for timely review and editing by SPSRF staff prior to submission of all grants 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.
  • Produce timely and comprehensive acknowledgements for all grants.
  • This position reports to the Development Manager of The SPSRF.

To apply: Email resume and cover letter to

Have skills that could help increase awareness of Stiff Person Syndrome and raise funds to research a cure?

📧 Tell us.