Parent-Powered Research Is Off and Running!

    242
    0
    SHARE

    When Jessica Gavin of Midlothian looked out at the crowd of parents and caregivers gathered at Grace Street Theater to watch a documentary in March, she knew she was on the right track.

    Gavin, the founder of the PANS Research and Advocacy Initiative (PRAI), is committed to raising money to help improve diagnosis and treatment options for PANDAS/PANS. The screening of the film, My Kid Is Not Crazy, was the first large-scale fundraiser for PRAI, which has raised more than $75,000 since its launch eighteen months ago. The film’s director, Tim Sorel, Susan Swedo, MD, of the National Institutes of Health, and Wei Zhao, MD, from the Children’s Hospital of Richmond at VCU, took questions at the sold-out event.

    “PRAI is raising the money so we can fund our first research project for PANS. We have Jonathan Kipnis from UVA as our scientific advisor as well as Dr. Zhao and Dr. Sanford from VCU,” Gavin said. “We are working on creating a think tank to help guide how we approach funding research.”

    Gavin has sold awareness bands, flowers for Mother’s Day, hosted the documentary, and held a fundraiser at Blue Mountain Brewery. “We also raised some initial start-up costs online through Crowdrise.”

    Gavin‘s first 5K is slated for September 30 at Westchester Commons in Richmond. She will also hold community walks for the cause in North and South Carolina. Although Gavin is a rookie in the world of nonprofit fundraising, her energy is unwavering.

    “Every dollar makes a difference. It plays an incredibly important role in getting our kids the care they need.” says Gavin. “Our goal is  $100,000 by October 1, and all proceeds will go toward research into PANS.”

    To learn more about PANDAS/PANS visit pansadvocacy.org.