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 […]
MWSF January 2023 Newsletter
Happy New Year! Our January 2023 newsletter is loaded with great news! Take a moment to read And enjoy!
MWS Family of the Month – Austin’s Story
Our story began in August 2017 when we found out we were expecting. Our family was so excited to add another child to our family. Our daughter’s motherly instincts immediately kicked in telling me how to take care of my body for a healthy pregnancy, making plans for the new baby, and choosing baby names, […]
Mowat-Wilson Syndrome Foundation Awards Over $143K in Research Grants
SELECTED PROJECTS WILL BENEFIT INDIVIDUALS WITH MOWAT-WILSON SYNDROME Las Vegas, September 1, 2022 — The Mowat-Wilson Syndrome Foundation (MWSF) announced today that it has awarded over $143,000 to selected research projects through the Maci Whisner Research Grant program. The awards will further the scientific understanding of Mowat-Wilson Syndrome (MWS) while enhancing and strengthening the lives […]
MWS Family of the Month – Jethro’s Story
I knew the moment I conceived Jethro, at that moment and the following day. A few weeks later this was confirmed as I had to sit down during a morning yoga class otherwise I would have fainted. I was working part-time at a college of Natural Therapies and had been studying Yoga Teacher Training for […]
