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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 […]

MWS Family of the Month: The Foresti Family

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 […]

Caregiving Corner

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 – […]

Fundraising News

2021 MWS Virtual Run Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF encourages individuals, groups and families to organize […]

Meet the Researcher – Zoom Webinar Series

Join us on Friday, September 3, 2021 at 7:00 pm Eastern Time as we host researcher, Dr. Andrea Conidi, Department of Cell Biology – Erasmus Medical Center Rotterdam (the Netherlands). Dr. Conidi has worked for the last 15 years in the ZEB2 field in the lab where ZEB2 has been identified. In the last 4 years, […]

MWS Researcher Highlight

Published August 1, 2021 Sumantra Chatterjee is a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine in New York. He has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work on Hirschsprung disease uncovered how multiple genes and mutations are […]

Rare Disease Advisory Councils

published August 1, 2021 Rare Disease Advisory Councils (RDACs) give the rare disease community a voice because these councils are sanctioned by individual states. The first RDAC was created in North Carolina in 2015 and was made up of patients, caregivers, families and providers. Since then, RDACS have been sanctioned in other states. RDACs can […]

Life Hacks for MWS families

Published August 1, 2021 Using social stories to prepare your child for a new experience Does your child become anxious when experiencing new things? Social stories can be used to help familiarize your child with new experiences BEFORE they occur. A social story is a simple book that uses words and pictures to show what […]