How do you spotlight the role of a patient community in advancing medical research to discover a cure for a rare disease? When a network of research institutions announced the discovery of a gene in the New England Journal of Medicine, SmithSolve helped a leading patient organization celebrate its role in the research. We ensured that top-tier media coverage highlighted the personal and collective contributions of the patient community.


The discovery of a gene mutation that causes Sturge-Weber syndrome, a rare disease characterized by a facial birthmark and neurological abnormalities, was published in the New England Journal of Medicine.

  • This represented a significant medical breakthrough for the disease and its patient community
  • Multiple research and academic facilities were vying for recognition
  • The Sturge-Weber Foundation wanted to increase awareness of its role in the discovery



SmithSolve broke through the noise by helping the Foundation share its 25-year journey of creating a research consortium, collecting tissue samples and raising money.

Our work included:

  • Prepared parent advocates for media interviews
  • Secured media interest in the Foundation
  • Designed customized communications materials including an e-newsletter


By securing widespread media coverage resulting in more than 15 original articles and six interviews with the Foundation’s President, the Sturge-Weber Foundation was established as a vital partner in this development and an important source for information.

“After 25 years, we had an answer. As a mom, as an advocate, I wanted to shout it from the rooftop. The first thing we did was call SmithSolve. They know rare disease, they know how to craft a message and they know media. They helped us explain our role in this amazing discovery and helped our parents and families understand what’s next.”

Karen Ball
Founder, President and CEO
Sturge-Weber Foundation