Join the Mowat-Wilson Syndrome Foundation Community Advisory Board

MWS Community Advisory Board

As we move into 2020, the MWS Foundation would like to have a formal process in place to gain more input from the MWS community. To support this goal, we are establishing a Community Advisory Board (CAB).

The CAB will consist of 10 members from the community at large who will serve a 2-year term. These CAB members will be asked to provide input/ideas/suggestions to the MWS Foundation thru participation in 4-6 conference calls/year, email communications/surveys and individual one-on-one phone calls with Foundation Board Members as needed.

If you are interested in being considered to join the 2020-2021 MWS Community Advisory Board please respond by email to al.triunfo2@gmail.com with the following information NO LATER THAN February 15, 2020.

  • Name
  • Location (City, State, Country)
  • Phone #
  • Age and Sex of your MWS family member

We believe that a Community Advisory Board can be a great asset in helping the MWS Foundation serve the community in the best possible way.

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 Giving Tuesday

Set Up a Giving Tuesday Fundraiser

We Can Do More Together!

GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. Facebook has announced a $7M matching for donations received on Tuesday, December 3rd  on a first come, first serve basis. You can help raising money for the Mowat-Wilson Foundation by setting up a Giving Tuesday campaign on your Facebook page.

Step 1 – Create the fundraiser on Facebook (click below to learn how)
Step 2 – Ask your family and friends to donate on Tuesday morning to qualify for the match.

 

Just Want To Make a Donation?

We thank you in advance for considering a donation for the Foundation. The money received will help us fulfill our mission to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. Thank You!

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.
Read more