LOBS OF LOVE EVENT AT MILFORD INDOOR TENNIS TO BENEFIT THE MOWAT-WILSON SYNDROME FOUNDATION Milford, CT – A fun evening of tennis and prizes is on tap for September 29 at Milford Indoor Tennis (580 Bridgeport Ave.). The Lobs of Love Event will benefit the Mowat-Wilson Syndrome Foundation. Mowat-Wilson Syndrome is a rare but extremely serious […]
Regional Events for 2018 Three great regional events are in place for 2018 so far. These are informal events where the families can get together in a relaxed and fun settings to exchange experiences and get to spend some time together.
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. […]
All MWS families invited to a great night of music, friends and fun! The Mowat-Wilson Syndrome Foundation cordially invites friends, donors and anyone who loves good music to its fundraising concert to take place in Barre, VT on May 5th, 2018.
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data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors.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 […]
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 […]
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 […]
We had eight great workshops at the 2017 Conference in Washington DC. Here are the slides and the audios.Feel free to share!
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 […]
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 […]
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 […]
The Mowat-Wilson Syndrome Foundation is pleased to report on the significant progress being made with the Mowat-Wilson Syndrome Patient Registry. The registry was launched back in November, 2016. Here is what Dr. Margaret Adam said at the time. “As is true for many rare genetic conditions, our ability to collect clinically relevant information that can […]
The MWS Foundation had been looking for some student volunteers to help with the design and conversion of our website to a new platform. We were able to make contact with Professor John Thacher at Gwinnet Technical College in Atlanta Georgia. Professor Thacher runs an upper level class that puts students in his class in […]
Las Vegas, NV November 14, 2016 – Mowat-Wilson Syndrome Foundation has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on November 29, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the U.S.) and […]
The Mowat-Wilson Syndrome Foundation is extremely pleased to announce that we are the recipient of a grant thru Genetic Alliance to establish a MWS patient registry! We will be using their Platform for Engaging Everyone Responsibly (PEER) to build and house the MWS patient registry. “Go Live” date for the registry is Monday, November 7, […]
October 15, 2016 We will be streaming the Northeast Medical Forum live from Seattle on our Facebook page. After the event, we will be posting all videos for you to watch and share with your friends, families, doctors and therapists. Download the 2016 Mowat-Wilson Syndrome Seattle Forum Program.
The Mowat-Wilson Syndrome Foundation is pleased to announce it was recently awarded a grant through Genetic Alliance, a leading nonprofit health advocacy organization, to establish a patient registry for individuals that have been diagnosed with Mowat-Wilson Syndrome (MWS). The grant will allow the Foundation to use Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER) to […]