Our 'What is Sotos Syndrome?' infographic is a really useful one page resource about Sotos syndrome at: childgrowthfoundation.org/what-is-sotos-syndrome
#SotosSyndrome #Sotos
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Hashtag
#sotossyndrome
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Share yours or your loved ones uniqueness and help us support those affected by #SotosSyndrome by completing this short form forms.office.com/e/s7fFCHgQLZ
#Sotos
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We are in the final stages of producing our new information booklet on Sotos syndrome. Can you help us by sharing your words and experiences of #SotosSyndrome? forms.office.com/e/s7fFCHgQLZ
We are looking for short, positive quotes about Sotos syndrome to include in this new booklet.
#Sotos
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Kickstarting a week of 'A day in the life of' stories for #ChildrensGrowthAwarenessWeek we have 8 year old Kiwi who has Sotos syndrome www.childgrowthfoundation.org/kiwi-day-in-the-life 💛
#ADayInTheLifeOf #SotosSyndrome #GrowthCondition #GrowthConditions #CGAW #CGAW2025
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Today is Sotos Syndrome Awareness day.
#sotossyndrome #sotossyndromeawarenessday #childgrowthfoundation
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💡 Spotlight on: Sotos syndrome 💡
Post 11 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 10 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 9 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 8 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 7 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 6 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 5 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 4 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 3 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 2 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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💡 Spotlight on: Sotos syndrome 💡
Post 1 of 11
#SotosSyndrome #Sotos #Overgrowth #GrowthCondition #GrowthConditions #SpotlightOn #SotosSyndromeAwarenessDay
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It's #SotosSyndromeAwarenessDay ✨
An important day in the child growth community to raise awareness of #SotosSyndrome and the children, young people, adults and their families with this #Overgrowth condition 💙
Keep an eye out for our Spotlight on: #Sotos syndrome this afternoon 💡
#GrowthCondition
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Throughout 2025 we are running a monthly #SpotlightOn series, shining a spotlight on a different growth condition each month, and later this week week we'll be spotlighting #SotosSyndrome 💡
We'll be sharing this #Sotos spotlight on 6 September, to mark this year's #SotosSyndromeAwarenessDay ✨
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‘Your genes are like instructions that tell your body what to do.
They set your height, what you look like – all the things that make you, you.’
My Sotos Story > childgrowthfoundation.org/my-sotos-story 📖
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#Sotos #SotosSyndrome #MySotosStory #Storybook
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A diagram illustrating the link between OGID syndromes and mouse models. A human silhouette labelled “OGID syndromes” lists ASD, ID, Overgrowth, Epilepsy, and Distinctive facial appearance. An arrow points to a mouse labeled “Mouse model,” branching into SS, MALNS, and TBRS models, each with a table of behavioural and neurological traits.
Atterton et al. discuss the similarities & differences of certain overgrowth-intellectual disability disorders & explore future approaches to ameliorate some of the unmet clinical needs of patients with #OGID.
doi.org/10.1242/dmm....
#SotosSyndrome, #MalanSyndrome #Tatton-Brown-RahmanSyndrome
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In the mean time, he’s a happy kid who loves #spongebob, #tikis, and #pixarmovies and who just happens to be living with #sotossyndrome.
End
#rarediseaseday #raredisorder
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#sotossyndrome is not a deadly disease, but still needs a lot more research as to why the mutation of the NSD1 gene causes the overgrowth. With all of the firings and grants being cut, who knows when/if we’ll ever know.
Part 5
#rarediseaseday #raredisorder
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People with #sotossyndrome can have moderate to severe learning difficulties. They can also have behavioural issues including ADHD, phobias, obsessions and difficulties with speech and language.
My kiddo has speech apraxia and has autism.
Part 4
#rarediseaseday #raredisorder
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Children with #sotossyndrome have other symptoms involved with the increased and rapid growth such as scoliosis, heart and kidney defects, hearing loss and problems with vision.
My kiddo has scoliosis and an enlarged aorta
Part 3
#rarediseaseday #raredisorder
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One in 14,000 babies are born with #sotossyndrome. The cause is a mutation in the NSD1 gene. This gene provides instructions for making a protein that is involved in normal growth and development. My kiddo is 11 and is 5’7” and 150lbs.
Part 2
#rarediseaseday #raredisorder
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Even though this monstrosity of an administration canceled it, today is #rarediseaseday My kiddo has #sotossyndrome. It’s a rare genetic disorder that affects children and adults. It causes excessive growth during childhood and behavioral symptoms throughout life.
Part 1
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Kicking off this feed with my favourite thing I did in 2024: the kids' book I wrote about #SotosSyndrome for the #ChildGrowthFoundation: childgrowthfoundation.org/product/my-s...
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