Children’s National Research on ESES in MWS and its Impact on Development The purpose of the research is to collect electroencephalogram (EEG) recordings, developmental assessments and information such as seizure history, treatment, imaging, and medical records from people with genetically-confirmed Mowat Wilson syndrome (MWS). We hope to gain a better understanding of the occurrence of […]
SELECTED PROJECTS WILL BENEFIT INDIVIDUALS WITH MOWAT-WILSON SYNDROME Las Vegas, September 1, 2022 — The Mowat-Wilson Syndrome Foundation (MWSF) announced today that it has awarded over $143,000 to selected research projects through the Maci Whisner Research Grant program. The awards will further the scientific understanding of Mowat-Wilson Syndrome (MWS) while enhancing and strengthening the lives […]
Mowat-Wilson Syndrome Growth Charts Male & Female | Height | Weight | BMI | Head Circumference Mowat–Wilson syndrome (MWS; OMIM #235730) is a genetic condition caused by heterozygous mutations or deletions of the ZEB2 gene. It is characterized by moderate-severe intellectual disability, epilepsy, Hirschsprung disease and multiple organ malformations of which congenital heart defects and […]
Caregiver Survey: Mowat-Wilson Syndrome The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community.
Recommendation for MWS Patients to Get Evaluated for Absent Spleen Recently, several reports have highlighted a rare finding in individuals with Mowat-Wilson syndrome (MWS), namely absent or missing spleen. The spleen is an organ that filters the blood and can help fight certain types of bacterial infections. The spleen is located in the left upper abdomen but […]
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data for 87 patients with a molecularly confirmed diagnosis of MWS, including 62 previously reported patients and 25 unpublished cases, and compared them with patients previously reported by other authors.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 […]
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 […]
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 […]
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 […]
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 […]
