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Newsletter - October 2023Welcome fall!In this edition:MWSF 10th Anniversary2024 International FamilyConference PlanningMWS Siblings 500 Miles for MWSRun for MWSOctober is here and wewish you all a wonderfulseason!
When the syndrome was firstdiscovered, because of the rarityof diagnosed cases, littleinformation and support wasavailable for families. TheMowat-Wilson SyndromeFoundation was founded onOctober 7th, 2013 by 8 parentsand grandparents of peopleaffected by MWS. At that timethere were no other diseaseorganizations focused on MWS.
On October 7th, the Mowat-Wilson Syndrome Foundation will celebrate its 10thbirthday. Our founding board was made up of 8 parents and grandparents ofchildren with Mowat-Wilson Syndrome. Our mission was to enhance the lives ofpeople affected by Mowat-Wilson Syndrome by providing family support, raisingawareness, and supporting research and education. We held our first conference in June of 2014. Doctors Mowat and Wilson attended.This was the first gathering for MWS families in the US. We received our 501(c)(3)designation shortly thereafter. We have held many regional events over the yearsthat have allowed families to gather and enjoy time together with others whounderstand the journey. In 2016 we launched the first patient registry for MWS. The information we gatherprovides much-needed information to researchers to better understand MWS and totarget specific areas of research needed to ensure the best outcomes for patients.In 2017 we held our second conference in Washington, D.C. This was a much largergathering with many attendees traveling from abroad. In 2020 we held a virtualconference due to COVID-19. In 2022 we awarded $143,000 in research grants through the Maci WhisnerResearch Grant. This year we are awarding an additional $50,000. We alsointroduced the Matrix patient tracking platform in 2022. This is now also theplatform for our patient registry. We are now planning for our next international conference, to be held inMinneapolis, MN, June 27th – 29th, 2024. We anticipate this will be the largestgathering, to date, for MWS families worldwide. We are busy planning a wonderfulevent. Of note, the recipients of last year’s grants will present their findings on theprogress of their research. Please keep June 27th-29th open for this great event!To celebrate our 10th anniversary, the foundation is working to establish anendowment to fund operations into the future. Funds will be used to support ourmission.
2024 MWSF InternationalFamily ConferenceJune 27-29, 2024Minneapolis, MN SAVE THE DATE!Registration Opens January 2024
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.John M. Schreiber, MD, FAES, Children’s National Hospital, Washington, D.C. Thestudy aims to track the occurrence of ESES (Electrical status epilepticus duringslow-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:Taylor Haughton at thaughton@childrensnational.orgor 202-476-5680.Remember, the MWSF can fund research but participants are needed to getresults!
Decide on the event type – single runner, a group run, a race in your town, afun run around the block, or even a family walk around the block!Pick a date during the month of OctoberRegister your event Send us a photo and we will send you a poster to promote your event!Create a Facebook Fundraiser benefiting the MWS FoundationOn the day of your event – Have Fun!Here are the steps:October 2023 - PARTICIPATE!Run, Walk or Stroll AnyDistance, Anywhere!Annual Awareness & Fundraising. Open to everyone!FUNDRAISER EFFORTSGoing the Distance for MWSTHERE IS STILL TIME TO JOIN THE FUn! SIGN UP TODAY!SIGN UP
Hold on to your handlebars because Team Bella crushed it at the Ultra Niagara 500 Challenge! 530 miles in just 5 days! These awesome 7 cyclists deserve all the praise and high-fives,and let's not forget the incredible support team that made it all happen behindthe scenes!Ride for MWS is another fundraising idea giving families around the world thechance to come together and raise awareness about MWS. If you're pumped upand ready to be part of this, reach out to the MWS Foundation, no event is too bigor small! Let's show some love and support for MWS! FUNDRAISER EFFORTSAUGUST 2023 - THANK YOU!ULTRA NIAGARA 500-CHALLENGE500 Miles in 5 DaysCheck at instagram.com/rideformws/
Sometimes the innocence, simplicity and pureness of life with a loved one whohas special needs catches you off guard.I can be busy doing something that involves all three of my kids when that look,a certain gesture or the sound of a soft voice grabs my attention. I can feel itbefore I see it and when I look up I want to take in and be a part of it, butdiscretely, in a way not to interrupt it. What I see is Kevin looking at Sarah or Scottwith such pure love and adoration. I also see Sarah and Scott reaching out to letKevin know that they are by his side. From moments like these, I am comforted toknow that the bonds are deep and lifelong.When Kevin looks at Sarah and Scott with his inside out smile, a laugh andusually a pretty tight hold, he is letting them know that they are his people. Iwatch Sarah link arms with Kevin or tussle his hair. Scott will put a protectivehand on Kevin’s shoulder. Kevin knows that he can count on them both.Mowat-Wilson families share many family memories on Facebook. The rolessiblings play in their brother or sister’s lives do not go unnoticed. To MWS Siblings - With LoveFrom a young age, many parents of ourfamilies wonder about the kind ofrelationships their children will develop,even more so for MWS siblings becausethe sacrifices aren’t small. Yet, momentslike we see here with Jonathan and Abbybuild the foundation for what is to come.You may not know that many MWS kidsare very particular about being touched,so this head-to-head contact shows a trustand love that goes beyond words.
This exchange between Jethro and Gabriel,makes you want to laugh out loud. Theintimacy of a brother holding onto your ear,and the other brother letting it happen, showsa familiarity and a willingness to make eachother happy. Kevin likes to touch Vikas’s ear,so perhaps this gesture is the equivalent ofblowing a kiss for our MWS kids.Fabian’s love for his big sister Laura meanseverything. Hanging on tightly to squeeze allhe can from the moment, Fabien will pushhimself to do difficult tasks to please his sister.Laura, with her gentle, kind, andcompassionate demeanor, helps guide andcare for her brother. It means the world to him.Romane, like many of our MWSchildren, took time to learn basictasks: how to eat, walk and hold apen. Her big sister is always herfavorite teacher. Along the way,Romane has taught her big sister(and her whole family) aboutunconditional love and how it canaffect the person you become.
For Kevin, most of his happiest moments involve being in the center of somegoofy act and having everyone in the same place at the same time. Moreprecious as everyone gets older, Kevin somehow knows he has to hang on to themoment tightly, take it all in, and capture it so he can enjoy it then and later byhimself or with friends.This article was originally posted in 2016 by Kathy Sharma, in her blog - ASharmed Life!. We revised it on 8-15-23. Thank you to the families who sharedtheir photographs and stories for the original article. These heartfelt imagescontinue to make people smile.
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.