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 […]

MWS Family of the Month – The Carter Family

TJ’s STORY No one could prepare us for the change that was coming to our lives when TJ was born or the journey that was ahead of us. It is not an easy path, but it is well worth traveling and has grown our faith and truly taught us about God’s love. TJ is our […]

Meet the Researcher – Zoom Webinar Series

Join us on Thursday, April 21, 2022 at 6pm Eastern time as we host researcher, Dr. Rebekah Charney. This event has been postponed due to illness – stay posted for updates on the new date/time. Dr. Charney is a developmental and stem cell biologist currently working as a postdoctoral research fellow at the University of […]