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 […]
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 […]
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 […]
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 […]
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 […]
Released September 1, 2021 The Early Days We always knew that Duda would be different. Duda had an ultrasound when we were 3 months pregnant; it showed abnormalities and although the amniocentesis test was inconclusive, our doctor told us that Duda had a syndrome. She was sure about that. From then on, we had ultrasounds […]
Released September 1, 2021 The MWSF Community Advisory Board meets every month, and in August, the discussion was all about advice for caregivers: Don’t be afraid of the diagnosis It can be very scary to receive the MWS diagnosis, but there is a community here to support you. Seek support and information about MWS – […]
