In April 2015, seven-year-old Clarissa Prado was diagnosed with Wiedemann-Steiner Syndrome (WSS). In June 2017, Clarissa’s mother Catherine joined a Facebook group for the Wiedemann-Steiner Syndrome (WSS) Foundation, and shares that the WSS Foundation’s mission is to serve “as a cornerstone of knowledge for individuals affected by this syndrome, their families, physicians, and researchers. Together, we support and advocate for ongoing research to help those diagnosed to reach their greatest potential.”
Photographs are care of Catherine DeMars
WSS was clinically described in 1989 but was not genetically identified until 2012, and to date only a few hundred patients have been documented worldwide. Because this syndrome was so recently identified and there have thus far been very few diagnoses, awareness of WSS is quite low even among medical professionals and the incidence of WSS is likely far greater than present estimates. Treatments are within reach, but the issue separating patients from these treatments is adequate funding for research.
This is where the WSS Foundation comes in. A Sacramento-based non-profit, the WSS Foundation exists to finance research exploring WSS treatment options. They believe that “lack of research presents the biggest barrier to care for patients” and in order to tackle that barrier head-on without waiting for medical practitioners to take the lead, dispense “micro-grants and awards to organizations interested in researching Wiedemann-Steiner Syndrome and its related symptoms. The foundation’s mission is to expand the body of knowledge for rare genetic syndromes like WSS... by supporting researchers, research institutions and non-profits whose mission aligns with ours.”
Members of the WSS Foundation hail from all corners of the globe. One look at the foundation’s events page shows that passionate volunteers are organizing fundraisers everywhere from Iceland to Texas, England to Washington, D.C. WSS may be a rare disease, but Clarissa, Catherine, and their family are not alone—the WSS Foundation ensures its members do not feel isolated or alone. Show your support in the weeks leading up to Rare Disease Day (the last day of February): use checkout code GIVE826 to donate 10% of your PLAE purchase to the WSS Foundation. Shop now to earn a donation.