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We’re entering the winterholiday season. Our best toyou as you celebrate withyour families!Newsletter - november/december 2023Falling into winter!In this edition:Giving Tuesday2024 International FamilyConference PlanningFundraiser Thank You!Family of the Month

SAVE THE DATE!Registration Opens January 2024

A big Thank you toeveryone whoRan, Walked or StrolledDuring our October 2023FundraiserFUNDRAISER EFFORTSGoing the Distance for MWS

Serrano Family LoveFamily is everything and you cansee that in Emilia Serrano’s family.Emilia loves every moment she canspend with her sister and her sisterloves spending time with Emilia.Emilia and her big sister Emilia really enjoys playing withdolls and doing all the things herbig sister does! They have abeautiful bond. But like my mostlittle sisters, Emi often messes withher big sis pulling at her hair orglasses.Adaline, are the best of friends.Adaline is home schooled and thismeans she and Emilia spend somuch time together. Emiliaabsolutely adores her big sis.Adaline works side by side withEmi, during therapies. And helps allof our therapists come up withgames and activities.

Emilia has the cutest “happy dance” when she is doing herfavorite things, such as eating and watching her favorite tvshows. She flaps her hands and feet, shakes her head from sideto side. Her silly quirks are just the cutest thing!When Emilia is not doing therapies orhaving check ups with her doctors,she’s spending family time, or cuddlingthe dog at home. But most days you cancatch us at the local library. Or maybespending time in nature or parks. Weare a busy family, always on the go,doing any fun activities we can find.As Emilia is growing up, we areseeing her personality blossom.She is persistent and daring. Yet ,so sweet and loving to her family.She gives us hugs and kisses allday long. Despite her challenges,she’s enjoying exploring life as atoddler should. Emilia is indeed a joy to our lives.

Reports on MWSF Funded ResearchAs we have communicated before, one of the research projects being funded bythe 2022 Maci Whisner Research Grant Awards, is a study being done by Dr. JohnM. Schreiber, MD, FAES, Children’s National Hospital, Washington, D.C. The studyaims to track the occurrence of ESES (Electrical status epilepticus during slow-wave sleep) and seizures in patients with MWS according to age, examinedevelopmental outcomes, and explore associations between ESES and seizures,development, and response to therapy. Volunteers are still needed for this research project! Your child may qualify if: They have genetically confirmed MWS and at least oneprevious EEG capturing sleep.For more information on how to participate contact:Dr. John Schreiber @ JSchreib@childrensnational.orgRemember, the MWSF can fund research but participants are needed to getresults!

The Mowat-Wilson Syndrome Foundation Education Committee strives to fulfillthe MWSF mission statement of AWARENESS and EDUCATION to enhance thelives of those living with MWS. We are responsible for the MWS Welcome Packetsas well as the new MWS Awareness Campaign called Wisdom Wednesdays.WISDOM WEDNESDAYSCheck the Mowat-Wilson SyndromeFoundation Facebook or Instagram to joina community supporting one another. Coming together makes us all stronger!

We are trying something new for our family of the month series. Weneed your input but sometimes when we are looking for families isnot the best time for you to share a story. You can send a documentwith your answers to some of the questions below and pictures ofyour child to share to Adero@mowat-wilson.org or click here tocomplete a Google form with your responses. When emailing articlesor pictures please use the subject “your child’s name – Family of theMonth”.1.Name of your child with MWS (first and last).2.Tell us about your child and their sibling relationships.3.What does your child do that really makes you laugh or in anotherway fills you with joy?4.What are your child's favorite hobbies or activities?5.What is the one thing you would like other parents to know aboutyour child with MWS?6.Tell us a story about a day in your child's life.7.What did we forget to ask that you want to share?Be the next Family of the Month!

The NewMWS PatientRegistry isLive!Getting involved is easy. On the Mowat-Wilson Foundation website, go to Matrix Portal and Patient RegistryThere you can:1. Request access if you are a first-time user.2. Login if you have previously registered.3. Watch a 6-minute tutorial on how tonavigate the Matrix portal.4. Review FAQs.We look forward to the high level ofparticipation the Mowat-Wilson SyndromeCommunity has shown for all ourinitiatives…. because we don’t know what’spossible.If you have questions, please reach out toatriunfo@mowat-wilson.orgLEARN MORE

DONATEThe mission of the Mowat-Wilson Syndrome Foundation is toenhance the lives of people affected by Mowat-WilsonSyndrome by providing family support, raising awareness, andsupporting research and education. Because we don't know what's possible.RESEARCH. SUPPORT. HOPE

HELPFUL SHORTCUTSGet on the MWS MapSubscribe to email newsVisit our Patient PortalFOLLOW US!Did you know you can add your child to the MWS Map.