Fundraising News

Save the Date for 3 upcoming fundraisers 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 […]

The FaceMatch Initiative

Background  As 50% of people with significant developmental delay or moderate intellectual disability (ID) have facial features which can provide a clue to genetic diagnosis, the overall aim of the FaceMatch project is to develop a sensitive and specific computer-vision phenotyping tool to aid and enhance diagnosis. It achieves this by comparing the facial features […]

The MWS Matrix Portal

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. The […]

Life Hacks for MWS families

Using a visual schedule Visual schedules are prompts that can be used for different activities and tasks – for example, putting on shoes or getting dressed. There are many types of visual schedules that can be used: cards, strips, sheets, posters, baseball card holders, pocket charts and much more. Visual schedules have many benefits: break […]

Caregiving Corner

Being a caregiver is often like being the “Lone Ranger”. It may be difficult to keep up with or reach out to family and friends – and it may feel like these relationships are fading. Generally, caregivers are more likely to feel isolated if they cannot leave their home, have experienced a major life change […]

Exciting news at MWSF!

  We are excited to introduce our newly hired Executive Director Marcia Smith, DBA, MBA! Marcia is  an experienced nonprofit professional that has led nonprofit programs and organizations for 20 years. Previously, she managed large HIV/AIDS programs, Behavioral Health contracts for a large hospital system, and helped start 2 small nonprofit organizations. Marcia graduated with her […]

MWS Family of the Month: The Sell Family

John and Wendy are the parents of Christian and Justin Sell.  Christian is 29 and was diagnosed with MWS at 23 ½.  Justin is 26 and his brother’s biggest advocate. John is a member of the MWS Foundation board and he and his wife Wendy have made it their life’s devotion to support both their […]