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MWSF Newsletter Jan 2023

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Mowat-Wilson Syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder frequently include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects. MWS is caused by heterozygous variants in the ZEB2 gene. Its symptoms and severity can be quite variable and ongoing research is needed to better inform families, caregivers and health professionals.TULANE UNIVERSITY SCHOOL OF MEDICINE SURVEYMWSF EDUCATION COMMITTEE"WISDOM WEDNESDAYS"NEWSLETTER - JANUARY 2023WHAT IS MOWAT-WILSONSYNDROME?The mission of the Mowat-Wilson Syndrome Foundation (MWSF) is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. Happy New Year 2023Because we don't know what's possible.IN THIS ISSUE:RESEARCH. SUPPORT. HOPEUPCOMING EVENTS

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The Mowat-Wilson Syndrome FoundationEducation Committee strives to fulfill the MWSF mission statement of AWARENESS andEDUCATION to enhance the lives of those livilng with MWS. Weare responsible for the MWS Welcome Packet as well as the newMWS Awareness Campaign, Wisdom Wednesdays. Keep an eye on our social media pages for the new MWSAwareness Campaign, Wisdom Wednesdays! We will sharestories of MWS triumphs, struggles, successes andhardships. The Wisdom of MWS lies in the people. Join us!

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MWSF partners with Tulane University School of Medicine to conduct surveyMariel Colon-Leyva, MS Margaret Huntwork, MD Samantha Bilton, MSThe Mowat-Wilson Foundation is partnering with an allergist/immunologist and two medical students from Tulane University School of Medicine to investigate whether immunodeficiencies may be associated with Mowat-Wilson Syndrome. Immunodeficiencies refer to conditions in which the immune system is not able to fight off infections properly. The Tulane team hopes to further what is known about the immune system function of people with Mowat-Wilson Syndrome. The more we learn about this rare condition, the better care we can provide, and the more we can assist caretakers and physicians in knowing about what to expect. The Tulane team designed a survey that will be distributed from February 1-28, 2023. This survey is completely voluntary and anonymous. We estimate it will take about 5-10 minutes to complete. It asks questions related to the health of people with MWS. One survey should be completed for each household. The project has been approved by the Tulane IRB. Thank you for your participation! We look forward to sharing the results of the survey later in 2023.Margaret Huntwork, MDDr. Huntwork is an Allergist & Immunologist at Tulane University School of Medicine. Her clinical interests include caring for people of all ages, but especially children, who have asthma, allergies, and immunodeficiencies. Dr. Huntwork directs the Allergy & Immunology Fellowship Program as well as the Pediatrics course and enjoys getting to know enthusiastic and inquisitive fellows and medical students.Mariel Colon-Leyva, MSMariel is a third-year medical student at Tulane University School of Medicine. Her special interests include working with both young and old people especially the Hispanic community, as she spent a lot of time at Luke’s House in New Orleans helping to provide care to the greater New Orleans Latinx population. She is interested in pursuing a career related to pediatrics and psychiatry or internal medicine!Samantha Bilton, MSSamantha is a fourth year medical student at Tulane University School of Medicine. Her special interests include working with children both inside and outside of the hospital. She spends much of her free time mentoring high school students and babysitting for local families. She will be pursuing a career in pediatrics.

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UPCOMING EVENTS FEB 28 IS RARE DISEASE DAYPlease mark your calendars! If you would like to participate by sharing a personal frame of your loved one or by hosting a Facebook fundraiser, please stayed tuned for further details.FOLLOW US!2024 MWS CONFERENCEMWSF is beginning to plan for the on-site/in-person conference in the Summer 2024. More information to come soon.

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Mark you calendars for RARE DISEASE DAY 2023

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