2019 MWS Regional Events

SIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]

Survey: Calling All MWS Caregivers!

Caregiver Survey: Mowat-Wilson Syndrome The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community.

Webinar: Epilepsy & Seizures – Watch Now!

Epilepsy & Seizures in Mowat-Wilson Syndrome March 7, 2019 – 8:00 pm EST Speaker: John Schreiber, MD Overview of seizures and epilepsy and how these manifest in MWS, with particular attention to neurological consequences and management.

2019 MWS Regional Events

SIGN UP FOR AN EVENT NEAR YOU! One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all […]

Mowat-Wilson Syndrome and Asplenia

Recommendation for MWS Patients to Get Evaluated for Absent Spleen Recently, several reports have highlighted a rare finding in individuals with Mowat-Wilson syndrome (MWS), namely absent or missing spleen. The spleen is an organ that filters the blood and can help fight certain types of bacterial infections. The spleen is located in the left upper abdomen but […]

MWS Foundation Announces 2020 Family Conference

2020 MWS International Family Conference June 25-27, 2020 – Houston, TX The MWS Foundation will host the 3rd International Family Conference on June 25-27, 2020 in Houston, Texas.

New Survey to Capture MWS Growth Data

As of March 1, 2018, the Mowat-Wilson Syndrome registry has over 133 participants involved at varying levels with the three current surveys. With the launch of the Growth Data survey we hope to be able to provide the valuable information necessary for the development of Mowat-Wilson Syndrome specific growth charts. Here are some comments from Dr. […]

Research Article: Phenotype and Genotype of 87 Patients with MWS and Recommendations for Care

This study , published by the American College of Medical Genetics and Genomics, analyses clinical data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors. The data  was obtained through collaborations involving clinicians from various countries. Such […]

Bringing Community Together with a MWS Approach to Life

How the Sell family embraces their son’s Mowat-Wilson Syndrome Article by Kathy Bell, mother of Kevin You don’t have to spend much time with a person who has Mowat Wilson Syndrome to figure out that his or her love for life is key to who they are as individuals and how they bring us together […]

Mowat-Wilson Syndrome Foundation Awarded $10K, Food Network Chopped, Grand Holiday Prize

The Mowat-Wilson Syndrome Foundation was the grand winner on Food Network’s Chopped on its Grand Holiday episode aired on December 5th, 2017. Chef Adam Greenberg, a three-time winner on Chopped, won the battle over three other undefeated competitors. What a great show! Adam chose the MWS Foundation to receive the $10,000 grand prize. Adam’s sister, Katie Fineberg, is a director […]