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data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors.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 […]

Mowat-Wilson Syndrome Patient Registry One Year Anniversary

2017 Conference Workshops Now Available on YouTube

We had eight great workshops at the 2017 Conference in Washington DC. Here are the slides and the audios.Feel free to share!

2017 International Family Conference Feedback Survey

Thank you to everyone who completed the Foundation survey to provide feedback for our 2017 conference in Washington, DC. Over half of the attending families responded with details of what they liked and what could be done better. We will keep all of your statements in mind as we prepare for future events. We asked […]

Television interview helps families find Mowat-Wilson Syndrome

With the approach of Rare Disease Day on February 28th, Al Triunfo, a member of the MWS Foundation Board of Directors, began contacting local news organizations in the Atlanta area in early January. He wanted to see if any of them were planning to run a story related to Rare Disease Day. After numerous emails […]

II Annual Houston Rare Disease Day

By Karen Baer, Mowat-Wilson Syndrome Foundation Secretary Houston celebrated its Second Annual Rare Disease Day Event on Saturday, February 25, 2017 at the United Way Building near downtown Houston. This was the second year for The Mowat-Wilson Syndrome Foundation to participate. Karen Baer, Secretary of the Mowat-Wilson Syndrome Foundation, her husband, Michael, and niece, Stephanie […]