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 […]

Mowat-Wilson Syndrome Patient Registry Update – February 2017

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 […]

Thank you Gwinnet Technical College!

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 […]

Mowat-Wilson Syndrome Foundation Joins the Global #GivingTuesday Movement Pledges to continue to support this rare community and their families.

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 […]

Mowat-Wilson Syndrome Patient Registry to Launch November 7, 2016.

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, […]

Watch the Seattle Medical Forum on Facebook

  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.

Mowat-Wilson Syndrome Foundation Awarded Grant Through Genetic Alliance

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 […]