The White Sutton Syndrome Foundation was established in the spring of 2018, by two couples that both had young sons who had been diagnosed with White Sutton Syndrome (WHSUS). When they started the foundation, WHSUS was very rare and it was difficult for the parents and loved ones of those with WHSUS to find each other. There was also an information vacuum about WHSUS, unless one was committed enough to hunt down and read jargon-heavy articles in medical journals.

The founders saw an opportunity to step into this gap and provide some of the answers, clarity and community that many were searching for. Having faced the long road to a diagnosis themselves, they understood how lonely that road could be and how desperately many longed for answers. They empathized with many who were aching for a clear, concise explanation of what their loved one’s diagnosis entailed, and what they could expect for them in the future.

To be clear, many questions about WHSUS remain. It isn’t as easy as creating a website and translating medical journal articles into plain English. The founders understood this, and one of the White Sutton Syndrome Foundation’s primary goals is to seek out more and better answers by supporting medical research. They also strive to serve those with WHSUS and their loved ones and to improve their quality of life. Lastly, understanding that awareness is one of the most effective ways to motivate people and cultivate change, they have dedicated themselves to educating others about WHSUS and its possible management and treatment strategies.