Sherri L. Jones

Founder & President

Sherri Jones is the founder of the Tarlov Cyst Society, where she combines her experience as a journalist, communicator, and patient advocate to advance awareness, education, and support for people affected by Tarlov Cyst Disease.

Following her diagnosis with Tarlov Cyst Disease in 2010 after years of unexplained symptoms, Sherri began researching the condition and connecting with patients, specialists, and researchers around the world.

Drawing on her background in journalism, public relations, and digital media, she transformed that search for answers into a broader effort to support patients, raise awareness, and improve understanding of Tarlov Cyst Disease. What began as peer support and patient education initiatives eventually grew into the Tarlov Cyst Society.

Today, Sherri leads the organization’s work in patient education, advocacy, awareness, and research initiatives, including the development of the Global Tarlov Cyst Patient Registry. She remains committed to ensuring patients have access to reliable information, supportive community, and opportunities to help shape the future of care and research.