Released November 1, 2021
The Mowat-Wilson Syndrome Foundation has released a short educational video to help family caregivers share valuable information about their adult/child with Mowat-Wilson Syndrome (MWS), which is a rare genetic disorder. The video includes information and perspectives from Drs. Mowat and Wilson, who identified the syndrome in 1998, and Jackie Arnold, the mother of an 11-year-old boy who was diagnosed with MWS in 2010.
Because MWS is so rare, many teachers, therapists, dentists, friends, neighbors, and respite caregivers may have never heard of this disease and find it difficult to interact with individuals with MWS for the first time. In the video, Drs. Mowat and Wilson share information about MWS, its incidence rate, clinical manifestations, and care management. Additionally, Jackie shares deeply personal information about her son’s personality, social disposition, love of school and sports, and how he communicates using adaptive technology.
This video can be used by families affected by MWS to share information about this rare disease with their care management team, educators, and community members. It is our hope that as others learn more about MWS and individuals with MWS, they will feel more comfortable, leading to more productive interactions and outcomes.
The Mowat-Wilson Syndrome Foundation would like to thank Dr. David Mowat, Dr. Meredith Wilson and Jackie Arnold for contributing to the video. Lee Corbett and Tracy Nelson from Cognetix Learning and Dave VanBlarcom from the Think Media Group graciously donated their time, effort and expertise to produce this important video, and the Mowat-Wilson Syndrome Foundation is extremely grateful for this major donation.