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2024 MWSF InternationalFamily ConferenceJune 27-29, 2024Minneapolis, MN Newsletter - July/August 2023This Month2024 InternationalFamily ConferencePlanningFundraising EventsMWSF Board UpdateFunded ResearchSibling Fundraiser
The MWSF Executive Board met in person forthe first time in over three years. Some of ourboard members came on during and followingCOVID so it was our first time being in a roomtogether. Paul Jacobi, board president, said thebest thing was noting how we all felt like oldfriends. While meeting virtually we have beenable to build true working and friendrelationships. Dedication and passion for ourwork were evidenced by the few members whocould not travel at this time but also spenthours on Zoom meeting with us. A quick review of the past year allowed us toreview successes and plan for the future. OurFundraising committee excitedly reported onthe huge success of the Free Throws for Loganevent. Upcoming events include a 500-mileBike Ride, the Run For MWS, and participationin the Philadelphia Distance Run withsponsorships for MWSF. More about theseevents later in the newsletter.Our education committee reviewed thesuccess of Wisdom Wednesdays andregrouped to help get the newsletter onstronger footing. Expect regular updates onour social media, websites, and via email.The board reviewed ideas from the CommunityAdvisory Board regarding conferenceprogramming and we are well on our way toproviding content that will meet your needs forthe 2024 conference. MWSF Board Update
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
2024 MWSF InternationalFamily ConferenceJune 27-29, 2024Minneapolis, MN SAVE THE DATE!Registration Opens January 2024
Save the date, June 27 - 29th now!2024 MWSF InternationalFamily ConferenceMall of AmericaAdd to favoriteOur MWSF Family Conference will beat the Radisson Blu and the Mall ofAmerica is just steps away down thesecond floor concourse. The 24 ridesin the Nickelodeon Universe®and theLego store are just a couple of theexciting things to explore at the Mall ofAmerica.The Mall of America is the largest retailshopping mall in the United States,even before you consider theamusement park at its' center. We areidentifying and confirming workshopsand presenters for the conference butrest assured there will be somethingfor everyone. From research reports tosibling gatherings to relaxed times tonetwork with other families, thispromises to be a great conference.Our MWSF Family Conference will beat the Radisson Blu and the Mall ofAmerica is just steps away down thesecond floor concourse. The 24 ridesin the Nickelodeon Universe®and theLego store are just a couple of theexciting things to explore at the Mall ofAmerica.The Mall of America is the largest retailshopping mall in the United States,even before you consider theamusement park at its' center. We areidentifying and confirming workshopsand presenters for the conference butrest assured there will be somethingfor everyone. From research reports tosibling gatherings to relaxed times tonetwork with other families, thispromises to be a great conference.
Reports on MWSF Funded ResearchAs we have communicated before, one of the research projectsbeing funded by the 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. The study aims totrack the occurrence of ESES (Electrical status epilepticus duringslow-wave sleep) and seizures in patients with MWS according toage, examine developmental outcomes, and explore associationsbetween ESES and seizures, development, and response totherapy. Volunteers are still needed for this research project! Your child may qualify if: They have genetically confirmed MWSand at least one previous EEG capturing sleep.For more information on how to participate contact:Taylor Haughton atthaughton@childrensnational.orgor 202-476-5680.Remember, MWSF can fund research but participants are neededto get results!
The Mowat-Wilson Syndrome Foundation Education Committee strives to fulfill theMWSF mission statement of AWARENESS and EDUCATION to enhance the lives ofthose living with MWS. We are responsible for the MWS Welcome Packets as well asthe new MWS Awareness Campaign called Wisdom Wednesdays. Like our Mowat-WilsonSyndrome FoundationFacebook or Instagrampages to join acommunity supportingone another. Comingtogether makes us allstronger!
FUNDRAISER EFFORTSGoing the Distancefor MWSThere are two primary types of family fundraisers to support the Mowat-WilsonSyndrome Foundation: First, RUN FOR MWS, since 2020 happening during themonth of October. Second, we are excited to launch RIDE FOW MWS this year, tobecome a summer annual effort. Join us Going the Distance for MWS!RUN FOR MWS - October To kick off the 2023 RUN FOR MWS, our president Paul Jacobi ispreparing physically and mentally to run a 1/2 marathon in theSeptember Philadelphia Distance Classic presented by Brooks Running.
read moreFUNDRAISER EFFORTSFollow Team Bella and the amazing cyclists who will endure500-miles on their bikes in 5 days from Niagara Falls to Brewster,NY starting July 30th. Go Team Bella!@rideformws
Family Bike RidesRide For MWSSummer is for bike rides! Join us in supporting the Mowat-WilsonSyndrome Foundation by organizing a bike ride fundraiser.Whether you're a passionate cyclist, a casual rider, or even if yourbike has been gathering dust, you can make a difference. Ridearound the block, explore the park, or embark on a distance ridewhile raising funds for a great cause. Contact laurac@mowat-wilson.org with a photo of your child to receive a personalizedFacebook fundraiser poster. Together, let's pedal towards hopeand change. Thank you in advance for your support!DONATEThe mission of the Mowat-Wilson Syndrome Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. Because we don't know what's possible.RESEARCH. SUPPORT. HOPE
Ellie Hawthorne was a 5th grader at St. Vincent DePaul Catholic School,in Long Beach, MS, this past year. Each year their teacher assigns aproject to teach them about business and handling money. Ellie and 3classmates decided to create The Bracelet Shack as their business.The girls made bracelets to sell to families and school staff andstudents. Ellie suggested to her classmates that they donate theproceeds to the Mowat-Wilson Syndrome Foundation, in honor of herbrother Declan, who has MWS. The classmates and the teacher wereimmediately on-board! At the end of their project, the Bracelet Shackdonated $45.46 to the Mowat-Wilson Syndrome Foundation! At theend of the school year, Ellie, whose father is in the Navy, had to movebecause her father had been stationed at a new base. Ellie decided tocontinue making bracelets on her own. She set up a Facebook pagecalled Ellie’s Bracelet Shack. For every 5 bracelets she sells, she isdonating $5.00 to the MWS Foundation! Let's support Ellie!Sister Supports MWS for Her Brother
Mowat-Wilson Syndrome is a genetic condition that affectsmany parts of the body. Major signs of this disorder frequentlyinclude distinctive facial features, intellectual disability, delayeddevelopment, an intestinal disorder called Hirschsprung disease,and other birth defects. MWS is caused by heterozygous variantsin the ZEB2 gene. Its symptoms and severity can be quite variableand ongoing research is needed to better inform families,caregivers and health professionals.
HELPFUL SHORTCUTSGet on the MWS MapSubscribe to email newsShop MWSF StoreVisit our Patient PortalFOLLOW US!Did you know you can add your child to the MWS Map.