You voted - chapeau.
#CACNA1C #RareDisease #TimothySyndrome #LongQT8 #smileyCFA25 #charityfilmawards #TheSmileys #CFA25
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The image is of crisp white snow with footprints leaving the logo of Timothy Syndrome Alliance in their wake. Text reads You can guide and signpost to show them the way. Please help us find others impacted by a CACNA1C diagnosis by helping them find us. #CACNA1C
By sharing, liking and following our page you can help guide and signpost to help others find us.
#CACNA1C #TimothySyndrome #LongQT8 #RareDiseases
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We have an online CACNA1C global support group - a community of people with common experiences and concerns who provide emotional and moral support for one another. Please reach out to us if you are impacted by CACNA1C.
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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Meet the Trustees: "I am a final-year Podiatry student graduating in 2025, passionate about improving health equity, advocating for patients, and continuously advancing evidence-based practice."
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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Meet the Trustees: "Hi everybody! My name is Sue Bresnahan. I am a paediatric nurse & mom of three great kids!
I am excited to be a part of this incredible community. I have learned so much already, I can't wait to see what the future holds!"
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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Montage of trustee Gemma as a festive elf with a striped red and white gift in hand on a festive snow background of baubles and spruce.
Meet the Trustees: "Hi all, I'm Gemma (: I am a wife to my amazing husband Paul & a mother to my awesome 13 year old son Noah.
Being a part of this group has been a huge part of my life. I feel very lucky to be able to work alongside such incredible individuals."
#CACNA1C #TimothySyndrome #LongQT8
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“He's had regular speech therapy since about 3 years old. I was his translator, and still am most days.”
6yo Parker has a #CACNA1C -related disorder.
Rare #speech conditions are commonly found in children who have #genetic disorders.
#TimothySyndrome #LongQT8 #RareDisease
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Montage of trustee Galina as a festive elf with a striped red and white gift in hand on a festive snow background of baubles and spruce.
Meet the Trustees: Galina "An artist-turned-researcher, my current thing is running art projects for young adult caregivers and evaluating their well-being impact, as part of a doctoral study with Warwick Uni."
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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Montage of trustee Meg as a festive elf with a striped red and white gift in hand on a festive snow background of baubles and spruce.
Meet Trustee Meg "I'm a lifelong learning enthusiast, evidenced by my obsession with podcasts and my occupation as a Learning & Development Consultant, alongside my role of Trustee for TSA
I'm passionate about health and empowerment and believe community is key."
#CACNA1C #TimothySyndrome #LongQT8
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Montage of trustee Nick as a festive elf with a striped red and white gift in hand on a festive snow background of baubles and spruce.
Meet our trustees: Nick "Father of 3 x boys/vikings, I look a bit like a Polar bear in an overcoat and spend most of my weekdays travelling for work or dreaming up the next unlikely hustle. My weekends are spent travelling for the kids"
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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Montage of trustee Sophie as a Christmas elf with a striped red and white gift in hand on a festive snow background of baubles and spruce.
Let's meet our Trustees!
"I'm Sophie and mum to 3 boys - middle one Calvin (17yo) has a CACNA1C variant. I'm a seeker of knowledge and ask questions when told something can't be done. Often found in the countryside walking our dogs Toast and Bean."
#CACNA1C #TimothySyndrome #LongQT8
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A festive red-on-white design featuring snowflakes, trees and baubles shares that our CACNA1C Patient Registry has 80 participants enrolled.
A festive red sleigh on a snow background with the text All our posts have the hashtag #CACNA1C to help widen our reach. You help signpost our community by liking, interacting and sharing our posts.
On the 1st day of Christmas, I joined the registry..
The CACNA1C Community Registry currently has 80 participants enrolled. Wow, isn't that amazing? Please help us continue to grow as a community by signposting our posts.
#CACNA1C #TimothySyndrome #LongQT8 #StrongerTogether
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For those who may not yet know:
CACNA1C related disorders
-> are rare genetic disorders
-> affect an unknown number worldwide
-> can result in life-threatening health problems
-> are often misdiagnosed
-> currently have no cure
#CACNA1C #TimothySyndrome #LongQT8 #RareDisease
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Hi everyone! We're here to build connections with academics, clinical teams, and researchers to strengthen our network on behalf of our global CACNA1C community.
#CACNA1C #TimothySyndrome #LongQT8 #RareDisease #Awareness #Research
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