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 […]

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 […]

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 […]

Life Hacks for MWS families

Released April 1, 2022 Tips for the Bathroom In the bathroom, put a basket of toys on the floor – if your child bends over, it helps them use the bathroom Give your child some water to drink in the bathroom to help them need to urinate Use a spray bottle with warm water or […]

Caregiving Corner

Released April 1, 2022 The MWSF Community Advisory Board would like to share some tips and resources for caregivers: Communication  Nonverbal does NOT mean that your child cannot communicate and that they don’t understand – you have to find a way to give them that communication – and there are many avenues and different ways […]

MWS Family of the Month – the Rodriguez Family