Caregiving Corner

Released November 1, 2021 The MWSF Community Advisory Board would like to share some information about what MWS families can expect after a diagnosis The decision to test children with MWS for COVID-19 is a difficult decision, and there are many factors to take into consideration. It is always best to ask one of your […]

New Donor Levels

New Donor Levels We would like to introduce our new levels of giving Everyone that joins our Sustaining Seas monthly giving program during our 2021 Giving Day Fundraiser will receive a special prize in the mail. They can also enter to win a $50 Amazon gift card. We will share more about this opportunity during […]

Save the Date for our 2021 Giving Day Fundraiser on Tuesday, November 30

GivingTuesday is a global movement designed unleash the power of radical generosity. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Since then, it has grown into a year-round global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity. Join the movement […]

MWS Family of the Month – the Rowe 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 […]

MWS Family of the Month: The Hughes Family

Released October 1, 2021 by Jodie Hughes, member of the MWSF Community Advisory Board Where it all began Our journey started many years before we became parents. I grew up in Torrance, CA and now reside in San Pedro, CA with my husband (Josh) of 9 years this October. We began dating back in 1993 […]

Life Hacks for MWS families

Released October 1, 2021 Life Hacks for MWS families The members of our Community Advisory Board have a few suggestions to share: Don’t use a bed frame. Put the mattress on the floor to reduce falls Have plastic mats for your child to sit on throughout the house to reduce stains from potty accidents Cover […]

Caregiving Corner

Released October 1, 2021 The MWSF Community Advisory Board meets every month, and in September, the discussion was all about developing a comprehensive and unified care team: If your child is in a children’s hospital and you are concerned about their care, you may be able to call for a “code blue”, requiring the advisory […]

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 […]

Life Hacks for MWS families

Released September 1, 2021 Carolina Foresti, of our September Family of the Month, has a few life hacks to share: Duda often has a difficult time going to sleep and her OT suggested using a bed tent. Another family recommended the Safety Sleeper Duda uses a “personal dictionary” to help people understand her. As she is […]