Giving Tuesday 2023 – Donate to MWSF!

We are weeks away from Giving Tuesday, November 28, 2023. It is the biggest day of the year for giving back! #Giving Tuesday. MWSF has a goal of raising $5,000 this year! Through past donations, the Mowat Wilson Syndrome Foundation has been able to create tools and resources to help families cope with this disease and […]

MWF Foundation Celebrates 10th Anniversary

On October 7th, 2023 the Mowat-Wilson Syndrome Foundation celebrated its 10th birthday. Our founding board was made up of 8 parents and grandparents of children with Mowat-Wilson Syndrome. Our mission was to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. We held our […]

October 2023 Newsletter

The October Newsletter is Here! Our October 2023 Newsletter is loaded with great stories! Take a moment to read and enjoy!  

Run for MWS: Open to Everyone!

Registrations are now OPEN for our fantastic October fundraising event!  Get ready to run, walk, or stroll your way to making a BIG difference for the MWS Foundation! Lace up those sneakers or put on your comfiest walking shoes, because it’s time to hit the pavement for an incredible cause! Choose a date, and to […]

MWSF July-August 2023 Newsletter

The July-August Newsletter is Here! Our July-August 2023 Newsletter is loaded with great stories! Take a moment to read and enjoy!  

Ride for MWS – Team Bella – Ultra Niagara 500-Mile Challenge

FOR IMMEDIATE RELEASE We are thrilled to announce the upcoming Ride for Bella and Mowat-Wilson Syndrome: Ultra-Niagara 500, a 500-mile bike ride dedicated to raising awareness and funds for Mowat-Wilson Syndrome (MWS). Organized by Rodrigo Meireles, father of Bella, who was born with MWS, this incredible journey will take place from Niagara Falls to Brewster, […]

Forty-Year-Old Suburban Mom to Make 1000 Free Throws for Charity

Jackie Arnold, a 40-year-old suburban housewife and mom, has pledged to make 1,000 free throws in five hours to raise awareness of Mowat-Wilson Syndrome and raise funds for the MWS Foundation. Jackie’s son Logan, who is 13 years old was diagnosed with MWS in 2011. MWS is a very rare genetic disorder, with less than […]

MWS Family of the Month – Maci’s Story

By Karissa (Maci’s mom) Our journey began in 2015, when my husband and I found out we were expecting our second child. She was longed for and already loved from the very first moment! Our 2-year-old son, Jake, was so excited to become a big brother! Early, non-invasive genetic screening told us in the 1st […]

February 28th – 2023 Rare Disease Day

February 28th Show Your Rare and Fundraise! LEARN MORE  

Important MWS Research Seeks Volunteers

Children’s National Research on ESES in MWS and its Impact on Development The purpose of the research is to collect electroencephalogram (EEG) recordings, developmental assessments and information such as seizure history, treatment, imaging, and medical records from people with genetically-confirmed Mowat Wilson syndrome (MWS). We hope to gain a better understanding of the occurrence of […]