Important MWS Research Seeks Volunteers

Children’s National Research on ESES in MWS and its Impact on Development The purpose of the research is to collect electroencephalogram (EEG) recordings, developmental assessments and information such as seizure history, treatment, imaging, and medical records from people with genetically-confirmed Mowat Wilson syndrome (MWS). We hope to gain a better understanding of the occurrence of […]

MWSF January 2023 Newsletter

Happy New Year! Our January 2023 newsletter is loaded with great news! Take a moment to read And enjoy!  

MWSF November 2022 Newsletter

Our newsletter is loaded with great news! Take a moment to read And enjoy!

MWS Family of the Month – Austin’s Story

Our story began in August 2017 when we found out we were expecting. Our family was so excited to add another child to our family. Our daughter’s motherly instincts immediately kicked in telling me how to take care of my body for a healthy pregnancy, making plans for the new baby, and choosing baby names, […]

2022 Run For MWS – Register Today!

Run For MWS Annual Awareness & Virtual Fundraising Event Hello MWS Families and Friends! Join us on our Annual Awareness & Virtual Fundraiser event – Run for MWS!  Here are the steps: Decide on the event type – single runner, a group run, a race in your town, a fun run around the block, or […]

Mowat-Wilson Syndrome Foundation Awards Over $143K in Research Grants

SELECTED PROJECTS WILL BENEFIT INDIVIDUALS WITH MOWAT-WILSON SYNDROME Las Vegas, September 1, 2022 — The Mowat-Wilson Syndrome Foundation (MWSF) announced today that it has awarded over $143,000 to selected research projects through the Maci Whisner Research Grant program. The awards will further the scientific understanding of Mowat-Wilson Syndrome (MWS) while enhancing and strengthening the lives […]

MWSF September 2022 Newsletter

Our September newsletter is loaded with great news! Take a moment to read And enjoy!

MWS Family of the Month – Jethro’s Story

I knew the moment I conceived Jethro, at that moment and the following day. A few weeks later this was confirmed as I had to sit down during a morning yoga class otherwise I would have fainted. I was working part-time at a college of Natural Therapies and had been studying Yoga Teacher Training for […]

Life Hacks for MWS families

Released May 1, 2022 Take the time to regularly check all the fitting and condition of all equipment that your child uses. Some get old with wear or may stop fitting as well as your child grows. There is a Facebook Group that lists handicap vans that are for sale Look for Facebook Groups for […]

Caregiving Corner

Released May 1, 2022 The MWSF Community Advisory Board would like to share some tips and resources for caregivers: Mobility and Stability  A stander can be used to help children stand – this type of stand helps children build up their leg muscles Gait trainers are also very helpful Rifton also sells bicycles Hippotherapy and […]