Exciting WSS Study in Italy!

If you are interested in participating in the study being completed by Dr. Livia Garavelli in Italy on C-2/C-3 vertebrae fusion in WSS patients, please download the 4 files below (instructions, purpose of the study, a medical history, and consent). Dr. Garavelli also...

Rare Disease Week Declared in Jasper Alabama

The city of Jasper, Alabama, recently issued a proclamation declaring February 28 – March 7 as Rare Disease Week in the city.  Local children who have been diagnosed with rare diseases were invited to attend a presentation at City Hall. On hand to receive the...

Gus’ Story: Our Search For Answers

By: Candace, mother of Gus (age 3) Gus was diagnosed with Wiedemann-Steiner syndrome in July 2017, just shy of his 3rd birthday. Here is our story… “Please don’t shoot the messenger, but…can we talk?” I will never forget this day. Gus was...

New WSS Foundation Board Member: Jacob Cummings

Please welcome Jacob Cummings to the WSS Foundation board. He and his wife, Maria, are already knee deep in planning a Lunch on the Lake WSS Fundraiser in Minnesota on August 4th (see comments). Jacob and his family (wife Maria and 5 Children) are lifetime residents...