The White Sutton Syndrome Foundation

The mission of the White Sutton Syndrome Foundation is to build a community that will improve the quality of life for those diagnosed with White Sutton Syndrome and their families, to educate others about this condition and to fund research in order to better understand its symptoms, treatments and prognosis.

Our strategies have been threefold, each intended to methodically address one of the goals in our mission statement. We have been building a community of families and caregivers through several online outlets (Facebook, RareConnect among them) and are holding an annual conference in Houston. That conference (along with regular updates to our website's research materials) is beginning to address our second goal, which is to educate others about White-Sutton syndrome. Our final goal (to fund research) is the most lofty, and not one we see ourselves achieving in the short term. However, we recently completed the White-Sutton syndrome patient-powered registry, which will enable researchers to have access to our patient population, and that's a strong foundation upon which we can build our future plans.

Our organization is very small at this point, and is an all-volunteer group. We hope to grow to the point where we can hire additional staff eventually. At this point, our volunteer corp are all well-positioned to help us succeed. Our president has a Master's degree in Applied Behavioral Analysis, and specialized in Autism. Our vice-president has two Masters degrees and currently heads the HR department at a leading special-needs employment center. Our treasurer has a Master's degree and works in the financial sector. Our secretary heads a department of graphic designers and has worked in multimedia production, event planning and social media marketing for more than a decade.

Despite being a small group, we are well-equipped to set the White Sutton Syndrome Foundation up for success.

We have built a website that is intended to be a useful tool for families facing a new diagnosis, and are consistently among the first few search results for "White-Sutton syndrome". We have built an online community of more than 160 caregivers that regularly support and encourage each other. We have recently completed a fully vetted and useful patient-powered registry. As is the case with almost all events this year, our first annual conference was cancelled, but we are in the beginning stages of planning a conference in 2021.