A team led by a UF Health scientist last month landed what it believes is the first National Institutes of Health grant ever awarded specifically to study a rare neurological disease. UF Health NIH Smith-Kingsmore Syndrome Foundation #smithkingsmoresyndrome #RareDisease
mainstreetdailynews.com/featured/uf-he…
We are honored and thrilled to be part of this amazing opportunity!
#rareasone #raredisease #ultrararedisease #smithkingsmoresyndrome
I know there are bigger things going on right now but today is Rare Disease Day #RareDiseaseDay Our 5yrold has #SmithKingsmoreSyndrome 1in200 worldwide his variant is de novo, he suffers from many of the typical symptoms,as well as others from being born at 24wks. Please SHARE /1
Jack’s SKS Awareness Day Walk For The Babies is done for another year! Walking is hard work for Jack, but he does it to help raise awareness. So can you! (Mostly indoors this year because of the weather.) #SunniestDayOfHope #SmithKingsmoreSyndrome Awareness #SmithKingsmoreSyndrome
If you’d like to read more about the team's plans, hit the link!👉bit.ly/ufhlthnihgrnt
#InTheNews #UFHealth #SKS #SmithKingsmoreSyndrome #Brain #Disorder
Celebration 🎉 🎉🎉
In the #raredisease community and #globaldevelopmentaldelay community, we celebrate inchstones! Today, Charlie successfully snapped and zipped his jeans all by himself! Progress which enhances independence is such an incredible gift! #smithkingsmoresyndrome
Jack did his walk for the SKS babies for Rare Disease Day 2023. Really moving fast this year! Milk and muffin at Starbucks Coffee for the win!
#RareDiseaseDay #SmithKingsmoreSyndrome #epilepsy #autism #sleep
All our downloads in one handy place 👇
childgrowthfoundation.org/information/
#GHD #SilverRussellSyndrome #Hypopituitarism
#SotosSyndrome #SmithKingsmoreSyndrome #TBRS
I’m a world full of roses be a sunflower 🌻☀️💛 #sunnyworldofhope #smithkingsmoresyndrome Smith-Kingsmore Syndrome Foundation
Excited to see experts Cincinnati Children's assemble the world's largest gathering of very rare #SmithKingsmoreSyndrome (SKS) families for a deep dive to improve outcomes. #CincyKidsScience Congrats to John Hogenesch Dave F Smith et al and TNX!!! to the families! bit.ly/2pW0MVp
☀️Giving Tuesday is one week away!
Our community continues to grow and we our committed to our mission to advance the science and understanding of SKS.
☀️Give the gift or research this #givingtuesday .
#smithkingsmoresyndrome #epilepsy #autism #sleep #developmentaldisabilities
My son Mason got diagnosed with a super rare genetic disorder called Smith-Kingsmore Syndrome! This rare disease needs funds for research if you like to support please donate via smithkingsmore.org/what-is-smith-… more info YouTube
or simply retweet
#smithkingsmoresyndrome #SKSAwareness
@rachelosaurus Autism Wellbeing National Autistic SocietyTalkAspie Autism care and share Autism Learner Spec Autism Services National Autistic Society Mason is non verbal he has sever learning difficulties and has #SmithKingsmoreSyndrome .
He will spit on his hand and throw it or wipe it. He will spit on people and anyone. He will spit on TVs if they are in or off on mirrors floors or anything.
On dis fine #Caturday we want to tel yew about #rarediseaseday2020 . Dis is Archie, mum and dad's godson, he is 13 and has #smithkingsmoresyndrome . He is one of less than 30 people in da world wiv it. So dat makes Archie special. He loves trampolines and wotsits.
Felix
❤️Giving Tuesday is here❤️
☀️Thanks to an anonymous donor, all donations to SKSF by December 31st will be matched, up to $10,000.
smithkingsmore.networkforgood.com/projects/17585…
#smithkingsmoresyndrome #epilepsy #autism #sleep #developmentaldisabilities #circadianrhythm #mtor
Parenting is hard. When you add complex medical needs into the mix, it can feel impossible.
Families told the Center for Family Involvement about the rollercoaster of seeking a rare diagnosis.
The CFI is proud to be offering genetic navigator support! centerforfamilyinvolvementblog.org/2023/01/03/fin…
Meet Charlie Wilson, 9, one of our patients with a #RareDisease , Smith-Kingsmore syndrome. Charlie’s mom, Sarah Lepore, is a UVA NICU NP who helps raise money for research as a Smith-Kingsmore Syndrome Foundation board member. #RareDisease Day
Thank you CFI Virginia for this much needed program to support people on the journey to diagnosis!
#smithkingsmoresyndrome #raredisease #epilepsy #autism #intellectualdisability
Proud to be part of CZI Science’s #RareAsOne Network—a community of 50 patient-led organizations that are accelerating research for #RareDisease . RareAsOne.org
