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 […]

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 […]

MWS Family of the Month – The Carter Family

TJ’s STORY No one could prepare us for the change that was coming to our lives when TJ was born or the journey that was ahead of us. It is not an easy path, but it is well worth traveling and has grown our faith and truly taught us about God’s love. TJ is our […]

Meet the Researcher – Zoom Webinar Series

Join us on Thursday, April 21, 2022 at 6pm Eastern time as we host researcher, Dr. Rebekah Charney. This event has been postponed due to illness – stay posted for updates on the new date/time. Dr. Charney is a developmental and stem cell biologist currently working as a postdoctoral research fellow at the University of […]

MWS Family of the Month – the Rodriguez Family

MWS Family of the Month – the Stegg Family

Official Video: About Mowat-Wilson Syndrome

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 […]

Meet the Researcher – Zoom Webinar Series

Join us on Thursday, October 7th, 2021 at 11 am Eastern time as we host researcher, Sumantra Chatterjee, a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine, New York. Sumantra has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work […]

Mowat-Wilson Syndrome Growth Charts

Mowat-Wilson Syndrome Growth Charts Male & Female | Height | Weight | BMI | Head Circumference Mowat–Wilson syndrome (MWS; OMIM #235730) is a genetic condition caused by heterozygous mutations or deletions of the ZEB2 gene. It is characterized by moderate-severe intellectual disability, epilepsy, Hirschsprung disease and multiple organ malformations of which congenital heart defects and […]