Entries by 4Foundation

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 […]

2016 Financial Reports

Financial reports for the year of 2016: 2016 Annual Report Mowat-Wilson Syndrome Foundation Balance Sheet 2016 Mowat-Wilson Syndrome Foundation Income Statement 2016. If you have any questions, don’t hesitate to contact us.    

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 […]

2017 International Family Conference

Jun 29 to July 01, 2017 – Washington D.C. Three days filled with lectures, workshops, Q&A sessions and activities for parents, individuals with Mowat-Wilson Syndrome and siblings. Guest speakers include Dr. David Mowat and Dr. Margaret Wilson among many other specialists that will speak on topics that affect most families like: Bowel Management, Mobility, Adaptive […]

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.

The MWS Study – Behavior Survey Results

Responses collected between November 26, 2007 and May 28, 2012. Here are the results of the Behavior Survey for individuals with MWS. Disclaimer – The information compiled below is by no means a scientific study but an informal survey. It is information compiled from the responses supplied to us from a survey of the members or our […]