On October 7th, 2023 the Mowat-Wilson Syndrome Foundation celebrated its 10th birthday. Our founding board was made up of 8 parents and grandparents of children with Mowat-Wilson Syndrome. Our mission was to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.
We held our first conference in June of 2014. Doctors Mowat and Wilson attended. This was the first gathering for MWS families in the US. We received our 501(c)(3) designation shortly thereafter. We have held many regional events over the years that have allowed families to gather and enjoy time together with others who understand the journey.
In 2016 we launched the first patient registry for MWS. The information we gather provides much-needed information to researchers to better understand MWS and to target specific areas of research needed to ensure the best outcomes for patients.
In 2017 we held our second conference in Washington, D.C. This was a much larger gathering with many attendees traveling from abroad. In 2020 we held a virtual conference due to COVID-19.
In 2022 we awarded $143,000 in research grants through the Maci Whisner Research Grant. This year we are awarding an additional $50,000. We also introduced the Matrix patient tracking platform in 2022. This is now also the platform for our patient registry.
We are now planning for our next international conference, to be held in Minneapolis, MN, June 27th – 29th, 2024. We anticipate this will be the largest gathering, to date, for MWS families worldwide. We are busy planning a wonderful event. Of note, the recipients of last year’s grants will present their findings on the progress of their research. Please keep June 27th-29th open for this great event!
To celebrate our 10th anniversary, the foundation is working to establish an endowment to fund operations into the future. Funds will be used to support our mission.