Patient Registry Plans
Update: We’ve selected our patient registry platform, and are working to build out the questionnaire. If you’re interested in participating in the registry, please email... Read More
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Blog
Marlies’s Story
Before I tell the story of our daughter Marlies, we would like to thank all parents who share their experiences with us. We are also... Read More
Non-Profit Status Update
It is with great excitement we share with you that our organization, The White Sutton Syndrome (WHSUS) Foundation, is now an official 501(c)(3) organization! What... Read More
Meeting of the Moms
I have amazing friends. I do. They are generous and encouraging. They willingly overlook the many times I ignore their text messages and cancel plans. My friends... Read More
Moritz’s Story
Moritz came into the world in 2012 as a seemingly healthy baby. He has 3 big, healthy sisters. Even during my pregnancy I noticed that... Read More
Cyclic Vomiting? This May Help.
A trend has been emerging in the White Sutton Syndrome (WHSUS) community recently. Caregivers have indicated that quite a few individuals with WHSUS also struggle... Read More
Lindsey’s Story
Lindsey is an almost 13-year-old girl who continues to defy odds daily. Our journey is a long one but one I feel compelled to share.... Read More
Rare Disease Genetic Testing Webinar
Many White Sutton families have already gone through the process of genetic testing for WHSUS, but many more are still only just beginning the process.... Read More
