White Sutton Syndrome Foundation
@WhiteSuttonFdn
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The White Sutton Syndrome Foundation™ is a global non-profit. Our mission is to serve, educate and fund research for those effected by White Sutton.
Joined March 2018
We’ve arrived! #WhiteSuttonSyndrome Foundation is onsite at the #RosenCentreHotel to setup for #WhiteSuttonTogether 2024! Just a few meetings today before beginning to set up tomorrow. We can’t wait to see your smiling faces in 2 DAYS!! #POGZ
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Questions about CHAMP1 in the lead-up to #WhiteSuttonTogether 2024? #CHAMP1 is a protein related to the #POGZ protein believed to be responsible for #WhiteSuttonSyndrome. We've partnered with @champ1research this year to allow families to meet and researchers to compare notes.
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#WhiteSuttonTogether starts next Friday! For the planners out there, here's our newly minted schedule so you can plan your weekend (either on-site in #Orlando or online): https://t.co/MU5NC3UlZt. See you in 6 days! #WhiteSuttonSyndrome #POGZ
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Attending #WhiteSuttonTogether sessions remotely? Submit questions for the presenter via the live chat on our streams on YouTube ( https://t.co/yst9lN9GKO) and Facebook ( https://t.co/cwAOK4AHsg ). Be sure you're logged in to access the chat features! See you online! #POGZ
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#WhiteSuttonTogether 2024 is so close! We're premiering a video featuring members of the #WhiteSuttonSyndrome and #POGZ community during our opening ceremonies. Not attending? No worries - we've got you covered. Watch the premiere with us right here: https://t.co/kV5m04nlFW
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Unable to attend #WhiteSuttonTogether in #Orlando this month? We’ll be live-streaming most sessions on our YouTube channel ( https://t.co/E0Kta8JU7Y) and our Facebook page ( https://t.co/IEtTutBOmM)! Schedule will be posted to the Live Stream tab of https://t.co/FqcmpaCspl soon!
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It’s beginning to look a lot like conference!! #WhiteSuttonTogether in #Orlando is coming up on October 25, and supplies are starting to pile up - T-shirts, wristbands & streaming hardware, oh my! #POGZ #WhiteSuttonSyndrome
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In April, many are focused on raising Autism awareness. Were you aware that White Sutton or the POGZ gene ranks among the top 10 genes linked to Autism? #POGZ #WHSU #WhiteSutton #WhiteSuttonFoundation #Autism #AutismAwareness
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In case you forgot: today is #WhiteSuttonDay! Don't forget to tell others about the special #WhiteSuttonSyndrome person in your life. Questions? We have (some) of the answers, and our community of experts is growing every day. Head over to https://t.co/FbnsyfdQ98 for more info.
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The research into the #POGZ gene responsible for #WhiteSuttonSyndrome continues. A recent study determined that POGZ helps with the expression of genes responsible for brain connections being made during fetal development. You can read more at https://t.co/BBQ3ajGYCu.
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Patients in the #WhiteSuttonSyndrome registry makes this condition more attractive to researchers. In order to further our goal of enabling research, we're thrilled to announce an upcoming registrant contest. More details to come in the near future - spread the word! #WHSUSDay
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Meet Eliette, a young lady with "a larger than life personality [who] will light up any room". Eliette has #WhiteSuttonSyndrome. One of best ways you can promote awareness is to share your child's story on our website. You can find out more at https://t.co/LRIsKHEYO6.
#WHSUSDay
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#WholeExomeSequencing is the primary way #WhiteSuttonSyndrome is diagnosed. Consult with your doctor & request diagnostic tests if you think your loved one has it. Already diagnosed? Add to our registry & help us enable awareness & research at https://t.co/FXItIuff5x.
#WHSUSDay
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Meet Moritz, a "happy, happy little boy [from Germany] who is loved as he is". Moritz has #WhiteSuttonSyndrome. One of the best ways you can promote awareness is to share your child's story on our website. Interested? You can find out more at https://t.co/fCFD249DcV.
#WHSUSDay
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A frequent question we get about #WhiteSuttonSyndrome is concerning its association with #Autism. With our patient registry, we can answer questions like this. Please consider adding to our registry ( https://t.co/FXItIuff5x) so we can continue to expand that data set! #WHSUSDay
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Today is #WHSUSDay! There's lots of ways to help spread awareness about #WhiteSuttonSyndrome - be sure to do what you can to tell others about this condition. Here's a few ways you can help today.
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We LOVE our rare peeps! We hope your #RareDiseaseDay2021 was a great one - remember that EVERY day is a good day to tell others about the special #WhiteSuttonSyndrome individuals in your life. #RareIsMany #RareIsStrong #RareIsProud
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LATE BREAKING NEWS: Today is #WhiteSuttonDay! Take a moment to spread the word about #WhiteSuttonSyndrome this evening. Or tomorrow. Or any day at all - let’s tell the world about these special people! #specialneeds #pogz
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Thanksgiving is over, so bring on the #UglySweaters & #Eggnog! Before holiday festivities, please take a moment to support #WhiteSuttonSyndrome this #GivingTuesday. Every little bit helps. Here's some ways you can support our work this year: https://t.co/Z9sPdC1p3L
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Mark your calendars - tomorrow is #GivingTuesday 2020! Our board wrote a holiday letter this year and put together some ideas for how you can support #WhiteSuttonSyndrome tomorrow and in the future. You can check it out at https://t.co/r8GkDdRxsQ.
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