Entries by 4Foundation

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 […]

The MWS Study – Summary of Findings

Study conducted in 2007, published 2013. Thank you to all the people with MWS, their families, and their carers who participated in the study. Your time filling out questionnaires and completing the interviews is greatly appreciated. Many of you also expressed such enthusiasm for the study, which was very encouraging for those of us involved in […]

NEW MWS Study – Psychological Problems and Incontinence in Mowat-Wilson Syndrome

Dear parents, dear caregivers, Bladder and bowel control are an important milestone in every child’s development and are relevant for independence and social acceptance. Elimination disorders (bedwetting, daytime wetting, soiling) can be stressful and demanding for parents and caregivers, although they can be treated effectively. So far, no studies on incontinence in persons with Mowat-Wilson […]

What We Are Funding – University of Kansas Medical Center Research Project

January 22, 2015 We are excited to have this opportunity to discuss our research directions and plans for Mowat-Wilson Syndrome (MWS). Our research efforts are focused on a better fundamental understanding of MWS, at the cellular level, and to identify the specific molecular defects that cause this disorder to test treatment options. The important work […]

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 […]

2016 Seattle Medical Forum

October 15, 2016 – Seattle, WA The Medical Forum will be an informative program for families and medical students. The morning program will include updates from the doctors on the various studies that are being conducted on Mowat-Wilson Syndrome. Doctors Wilson and Adam will conduct a clinic in the afternoon for the medical students in […]

2016 Atlanta Family Pool Party & BBQ

August 20, 2016 – Atlanta, GA 1:00 pm – 6:00 pm Location Al & Susan Triunfo’s place 901 Dogwood Trail, Tyrone, GA 30290 Join us for a fun filled day! Swimming pool with basketball hoop, putting green, corn hole, bocce ball and other games. BBQ served around 4 p.m. Hamburgers, hot dogs, sides & fixins! […]