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, […]
Meet Bella, the Ballerina
Bella the Ballerina originally published January 1, 2016 ~ ASHARMEDLIFE In 2016 A Sharmed Life! highlighted Bella the Ballerina. They gave us permission to replicate their article here. It has been seven years since Bella was in this particular performance but she continues to inspire us and hopefully you. Find your child’s passion and look […]
MWSF April 2023 Newsletter
The New Patient Registry is Here! Our April 2023 Newsletter is loaded with great stories! Take a moment to read and enjoy!
MWS Family of the Month – Harper’s Story
By Harper’s mom Our daughter, Harper, is a perfect 7-year-old kid. She is happy, hilarious, smart, hardworking, kind, and stubborn. She loves her sister and tolerates our dog, she LOVES her friends and Roblox, and she has Mowat-Wilson Syndrome. My husband, Adam, and I were so excited to get married and start our family in […]
MWSF March 2023 Newsletter
Great Stories and the Most Expected Announcement! Our March 2023 newsletter is loaded with great stories! Take a moment to read and enjoy!
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 […]
