MWSF Store Now Open!

Support the MWS Foundation and Raise Awareness!

Great Gifts for Families, Caregivers, Teachers and Therapists!

The Mowat Wilson Syndrome Foundation is proud to announce the grand opening of the MWS Store featuring many options of products. Looking for a gift? Please support the Foundation by shopping at our store.

Our initial inventory includes:

  • T-shirts
  • Polo shirts
  • Hoods
  • Hats
  • Drinkware
  • Tote bag
  • Car magnet
  • Emergency Window Decal for non-verbal/special needs
  • Bracelets

 

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2019 MWS Regional Events

SIGN UP FOR AN EVENT NEAR YOU!

One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all regions in North America. Please contact us if you are interested in hosting  a family regional event.
Read more

Survey: Calling All MWS Caregivers!

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. Read more

Webinar: Epilepsy & Seizures – Watch Now!

Epilepsy & Seizures in Mowat-Wilson Syndrome

March 7, 2019 – 8:00 pm EST

Speaker: John Schreiber, MD

Overview of seizures and epilepsy and how these manifest in MWS, with particular attention to neurological consequences and management. Read more

2019 MWS Regional Events

SIGN UP FOR AN EVENT NEAR YOU!

One of the Mowat-Wilson Syndrome Foundation’s mission is to provide support to the families. Regional events are organized for families to get together to meet, greet and exchange experiences. We have found that these events are extremely valuable for our community. We would love to extend these regional get togethers to all regions in North America. Please contact us if you are interested in hosting  a family regional event.
Read more

MWS Foundation Announces 2020 Family Conference

2020 MWS International Family Conference

June 25-27, 2020 – Houston, TX

The MWS Foundation will host the 3rd International Family Conference on June 25-27, 2020 in Houston, Texas.
Read more

Lobs of Love Fundraiser

LOBS OF LOVE EVENT AT MILFORD INDOOR TENNIS TO BENEFIT THE MOWAT-WILSON SYNDROME FOUNDATION

Milford, CT – A fun evening of tennis and prizes is on tap for September 29 at Milford Indoor Tennis (580 Bridgeport Ave.). The Lobs of Love Event will benefit the Mowat-Wilson Syndrome Foundation.

Mowat-Wilson Syndrome is a rare but extremely serious condition found in many countries and across ethnic groups. In Connecticut, five children – two of whom live in Milford – are known to be affected by the disorder. Experts estimate that hundreds of U.S. children are affected by Mowat-Wilson. The Foundation is raising funds to hold a medical conference on the syndrome in 2020. Significant signs of the syndrome include distinctive facial features, intellectual disability, delayed development and other birth defects.

Lobs of Love attendees will enjoy a fun-filled evening featuring round robin mixed doubles and serving competitions. A silent auction and raffles are included, as well as appetizers and drinks. Event organizers are seeking donations of goods or services as well as financial contributions.

Current Platinum Sponsors include: Milford Indoor Tennis, The Keeney Manufacturing Company, Rocco Property Management, Pyramid Real Estate Group and Fairfield County Bank. For sponsorships, donations, or additional information, please contact Laura Chrysostomo at laurac@mowat-wilson.org

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2018 MWS Regional Events

2018 Regional Events

The Foundation hosted three great regional events in 2018. Regional events are informal events where the families get together in a relaxed and fun setting to exchange experiences and get to spend some time together.
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New Survey to Capture MWS Growth Data

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As of March 1, 2018, the Mowat-Wilson Syndrome registry has over 133 participants involved at varying levels with the three current surveys. With the launch of the Growth Data survey we hope to be able to provide the valuable information necessary for the development of Mowat-Wilson Syndrome specific growth charts.

Here are some comments from Dr. Margaret Adam about the Growth Data Survey:

“Individuals with Mowat-Wilson syndrome (MWS) frequently are small compared to other people their age. This means that when a provider tries to plot that person’s growth (weight, length/height, and head circumference) on typical growth charts, the person with MWS appears to be small. Sometimes the person seems very small or the person’s growth is not on the typical growth chart at all. When a person’s weight is below what is expected for age, physicians often become concerned that the person is not getting enough calories, and this can sometimes lead to unnecessary procedures, such as placing a feeding tube when a feeding tube is not needed.

For this reason, we hope to develop growth charts that are specific to individuals with MWS. Our goal is for these growth charts to be available for people of all ages and include weight, length/height, and head circumference. This will allow families and providers to know if the person with MWS is growing as expected. If, indeed, the person is not growing as well as expected for a person with MWS, then the provider could appropriately recommend treatment for the growth issues.

To make this project successful, we need to be able to collect information on growth from many people and over a range of ages, from birth to adulthood. Many families will be able to get this information from their primary care provider, since growth is measured at most doctor visits. We hope to be able to provide families and providers with this important information so that growth can be monitored appropriately.”

In order to share your child’s growth data you may need to contact the healthcare providers to request the information. Feel free to download the letter from the MWS Foundation explaining the reason for the request.  Once you have the data follow these steps:

  1. If you are already participating in the registry, you just need to sign in to access the surveys. If you have completed Survey #1 – Baseline Information, you will then be able to proceed directly to Survey #4 – Growth Data. It is not necessary to complete surveys 2 & 3 first.
  2. For those new to the registry, you will be required to complete an initial registration, establish your privacy settings and complete Survey #1 – Baseline Information before having access to complete the Growth Data Survey.

Click here to go to the MWS Registry to share your data

Your willingness to share data is vital to research and to gaining new knowledge about MWS. Because we don’t know what’s possible…

 

Full Press Release

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1964.. The Tribute Concert to Benefit the Mowat-Wilson Syndrome Foundation

All MWS families invited to a great night of music, friends and fun!

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The Mowat-Wilson Syndrome Foundation cordially invites friends, donors and anyone who loves good music to its fundraising concert to take place in Barre, VT on May 5th, 2018. Read more