Survey: Calling All MWS Caregivers!

Caregiver Survey: Mowat-Wilson Syndrome

The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community. Read more

Webinar: Epilepsy & Seizures – Watch Now!

Epilepsy & Seizures in Mowat-Wilson Syndrome

March 7, 2019 – 8:00 pm EST

Speaker: John Schreiber, MD

Overview of seizures and epilepsy and how these manifest in MWS, with particular attention to neurological consequences and management. Read more

2019 MWS Regional Events


One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all regions in North America. Please contact us if you are interested in hosting  a family regional event.
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Lobs of Love Fundraiser


Milford, CT – A fun evening of tennis and prizes is on tap for September 29 at Milford Indoor Tennis (580 Bridgeport Ave.). The Lobs of Love Event will benefit the Mowat-Wilson Syndrome Foundation.

Mowat-Wilson Syndrome is a rare but extremely serious condition found in many countries and across ethnic groups. In Connecticut, five children – two of whom live in Milford – are known to be affected by the disorder. Experts estimate that hundreds of U.S. children are affected by Mowat-Wilson. The Foundation is raising funds to hold a medical conference on the syndrome in 2020. Significant signs of the syndrome include distinctive facial features, intellectual disability, delayed development and other birth defects.

Lobs of Love attendees will enjoy a fun-filled evening featuring round robin mixed doubles and serving competitions. A silent auction and raffles are included, as well as appetizers and drinks. Event organizers are seeking donations of goods or services as well as financial contributions.

Current Platinum Sponsors include: Milford Indoor Tennis, The Keeney Manufacturing Company, Rocco Property Management, Pyramid Real Estate Group and Fairfield County Bank. For sponsorships, donations, or additional information, please contact Laura Chrysostomo at


2018 MWS Regional Events

2018 Regional Events

The Foundation hosted three great regional events in 2018. Regional events are informal events where the families get together in a relaxed and fun setting to exchange experiences and get to spend some time together.
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1964.. The Tribute Concert to Benefit the Mowat-Wilson Syndrome Foundation

All MWS families invited to a great night of music, friends and fun!


The Mowat-Wilson Syndrome Foundation cordially invites friends, donors and anyone who loves good music to its fundraising concert to take place in Barre, VT on May 5th, 2018. Read more