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The Foresti Family
The Early Days
We always knew that Duda would be different. We had an ultrasound when we were 3 months pregnant; it showed abnormalities and although the amniocentesis test was inconclusive, our doctor told us that Duda had a syndrome. She was sure about that.
From then on, we had ultrasounds every month to monitor her heart, brain, and kidney development.
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The MWSF Community Advisory Board meets every month, and in August, the discussion was all about advice for caregivers:
Don’t be afraid of the diagnosis
It can be very scary to receive the MWS diagnosis, but there is a community here to support you. Seek support and information about MWS – through the MWSF website and Facebook groups.
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Carolina Foresti, of our September Family of the Month, has a few life hacks to share:
Duda often has a difficult time going to sleep and her OT suggested using a bed tent.
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We would like to introduce the new
Meet the Researcher Zoom series
Join us on Friday, September 3, 2021 at 7pm Eastern time as we host researcher, Dr. Andrea Conidi, Department of Cell Biology – Erasmus Medical Center Rotterdam (the Netherlands)
Dr. Conidi has worked for the last 15 years in the ZEB2 field in the lab where ZEB2 has been identified. In the last 4 years, he started investigating the molecular mechanisms underlying Mowat-Wilson Syndrome and associated congenital defects caused by mutations in ZEB2.
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Join us on Thursday, October 7 th, 2021 at 11am Eastern time as we host researcher, Sumantra Chatterjee, a Research Assistant Professor at the Centre for Human Genetics and Genomics in NYU Grossman School of Medicine, New York. Sumantra has trained both as a developmental biologist and a human geneticist studying complex congenital diseases. His work on Hirschsprung disease uncovered how multiple genes and mutations are interconnected, which helped to explain the severity of the disease observed in different patients and help classify patients better. You can register for this FREE event here |
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2021 MWS Virtual Run
Mark your calendar and get ready to put on your running shoes this fall. Every step you take makes a difference! The 2021 MWS run is a national effort that will involve runs all over the US during October & November 2021. The MWSF encourages individuals, groups and families to organize fun-runs and local races to raise funds to support the foundation and the information and resources it provides. MWSF will provide a form so we can learn about every run that takes place. Please note that all runs will need to check with the local authorities to make sure that all permits and insurance are acquired.
2021 Milford, CT MWS Run: Never give up, not now, not ever
This fundraiser will involve a 5K run and Half Marathon on October 16, 2021.
2021 Golf Tournament, Las Vegas, NV
Join us for our 3rd annual Golf Tournament in Las Vegas on November 5th. Individual tickets are $125, and a Foursome is $500. The Tournament is a 4-player scramble and will be held at the Painted Desert Golf Club, starting at 7:30am. There is a $10,000 hole-in-one prize and trophies for 1st and 2nd place. Lunch will be served after the round. Sponsorships are available: $1000 to be a Gold Sponsor, $500 to be a Silver Sponsor and there are 2 Bronze sponsorships available for $150 each. Each Bronze Sponsorship is for a prize hole: Longest Drive or Closest to the hole.
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The MWS Matrix Portal is up and running! This portal is available only for MWS families. The MWS Foundation in partnership with Across Healthcare have created a customized health records portal for MWS patients to help patients and caregivers easily capture, track, and share information related to medications, symptoms, activities, and electronic health records. Read More...
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Helpful Resources
Global Genes is hosting a 3-part webinar series in August: Gene-Based Diagnosis 101: How to Successfully Navigate the Diagnostic Journey
The Help Guide – advice for family caregivers
Learn about Gannet Hosa-Betonte and his journey with MWS
The Child Mind Institute is an independent, national nonprofit dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Our teams work every day to deliver the highest standards of care, advance the science of the developing brain and empower parents, professionals and policymakers to support children when and where they need it most
Caregiver Kula is an intentional community of the heart that empowers Caregivers with wellness education and embodied self-care tools to improve their health and wellness! They have dedicated volunteers who are true experts in health and wellness and giving their time and skills to offer care and support to those who care for others. It is free to join their private Facebook Group
Check out the FREE Rare Revolution Magazine. Their mission is to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It's time to turn the tide!
Here is the link to their Spring 2021 edition
Mowat-Wilson Growth Charts are available. These charts can help pediatricians and other medical professionals provide the best care to MWS individuals with problems in terms of their growth. This is the first study on growth in patients with MWS. :
The Family Caregiver Alliance provides a wealth of resources, including free seminars, for caregivers of all ages
NORD Assistance Programs - NORD (the National Organization for Rare Disorders) offers programs to help rare disease patients and caregivers access the support they need. These programs provide medication, financial assistance, respite and more for those who qualify.
Teleplay provides online and interactive activities for children & families – and has been highlighted by NORD
Click Here to link to Mowat-Wilson Syndrome Growth Charts
Click Here for a list of Caregiver Blogs
Click Here to review and purchase the chapter on Mowat-Wilson Syndrome (authored by Dr Mowat & Dr. Wilson) in Cassidy and Allanson's Management of Genetic Syndromes, Fourth Edition. The cost for a pdf of this chapter is $42.
Click Here to see an inspiring blog written by Leslie Krongold, who is a rare disease patient
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Spread the MWS word, share our iSupport logo with pride!
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