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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 17/06/2025

What are voltage-gated calcium channels? Our VGCCC 101 slides walk you through the basics of voltage-gated calcium channels - what they are, how they help our cells communicate, and why they’re so important for health. #calcium #channelopathies #raredisease

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 17/06/2025

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 22/05/2025

#CACNA1F Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

Purple graphic featuring a unicorn with pink mane and green stars. White text reads:
“LOOKING FOR THE ONE IN A MILLION
CACNA1F is a gene that is important for retinal neurotransmission, or how neurons between the eyes and the brain communicate.
Changes in CACNA1F are linked to disorders such as congenital stationary night blindness (CSNB), Aland Island Eye Disease, nystagmus, strabismus, and other visual impairments.
We are looking for more families and individuals with confirmed CACNA1F gene changes to join the CACNA1F community.
Please contact us if this is you.”
Website: thevgccc.org

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 09/05/2025

#CACNA1H Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

Purple background graphic with the heading “LOOKING FOR THE ONE IN A MILLION” in bold white text. The text explains that CACNA1H is a gene that is important for neurotransmission, or how neurons communicate with each other. Changes in CACNA1H are linked to disorders such as epilepsy, especially absence epilepsy, autism spectrum disorder, behavioural illnesses, primary aldosteronism, and congenital amyotrophy. The graphic encourages individuals or families with confirmed CACNA1H diagnoses to contact the organisation to join the CACNA1H community. On the right side is a whimsical illustration of a sparkly unicorn with a purple mane and green stars around it. Website at the bottom: thevgccc.org.

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 02/05/2025

#CACNA1G Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

Purple background graphic with the heading “LOOKING FOR THE ONE IN A MILLION” in bold white text. The text explains that CACNA1G is a gene essential for communication between the brain and the rest of the body. Changes in this gene may cause intellectual disability, developmental delays, ataxia (uncoordinated movements), epilepsy, and eye conditions. The graphic encourages individuals or families with confirmed CACNA1G-related diagnoses to contact the organisation to join the CACNA1G community. On the right side is a whimsical illustration of a sparkly unicorn with a purple mane and green stars around it. Website at the bottom: thevgccc.org.

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 02/05/2025

#CACNA1G Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 08/04/2025

#CACNA1S Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

A purple graphic with white text and a hand-drawn unicorn with a pink mane, golden horn, and green stars around it. The heading reads "LOOKING FOR THE ONE IN A MILLION." The text explains that the CACNA1S gene is essential for skeletal muscle contraction and vital for functions like respiration, posture, communication, locomotion, and heat production. It states that mutations in CACNA1S are linked to symptoms such as muscle weakness, delayed motor development, scoliosis, dysmorphic facial features, periodic paralysis, and susceptibility to malignant hyperthermia. It invites families and individuals with confirmed CACNA1S gene changes to join the community, ending with a call to contact and the website: thevgccc.org.

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 08/04/2025

#CACNA1S Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 01/04/2025

#CACNA1C Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

A purple digital graphic features a unicorn with a pink mane, gold horn, and a happy expression, surrounded by green stars. The text at the top says, "LOOKING FOR THE ONE IN A MILLION." Below, it explains that the CACNA1C gene helps control calcium flow in the heart and brain. Changes in this gene are linked to conditions like autism, ADHD, seizures, low muscle tone, immune problems, and heart issues, including sudden arrhythmia. The message invites families and individuals with confirmed CACNA1C gene changes to join the CACNA1C community and provides a website for contact: thevgccc.org.

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 01/04/2025

#CACNA1C Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 18/03/2025

#CACNA1B Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

A digital graphic with a purple background features white text and an illustrated unicorn with a pink mane and a glittery texture. Green stars are scattered around the unicorn. The bold heading reads, 'LOOKING FOR THE ONE IN A MILLION.' The text explains that the CACNA1B gene is important for brain communication and that changes in this gene are linked to neurological disorders such as seizures, epileptic encephalopathy, dystonia, autism spectrum disorder, and neuropathic pain. It invites families and individuals with confirmed CACNA1B gene changes to join the CACNA1B community and provides the website address 'thevgccc.org' for contact.

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 11/03/2025

#CACNA1A Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

A digital graphic with a deep purple background features a textured, pastel-coloured unicorn with a golden horn and small green stars around it. White uppercase text at the top reads, "LOOKING FOR THE ONE IN A MILLION." Below, smaller white text explains that CACNA1A is a gene important for neuron communication and that changes in this gene are linked to disorders like epilepsy, hemiplegic migraine, and episodic ataxia type 2, along with other neurological symptoms. The text invites individuals with confirmed CACNA1A variants to join the CACNA1A community and provides a website, thevgccc.org, for more information.

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 11/03/2025

#CACNA1A Raising awareness and promoting collaboration across the #calcium #channelopathies. Find us at thevgccc.org

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 07/03/2025

#CACNA1D Raising awareness and promoting collaboration across the calcium channelopathies. Find us at thevgccc.org

A digital graphic with a purple background features white text and an illustrated unicorn with a light purple mane. The heading, "LOOKING FOR THE ONE IN A MILLION," is in bold uppercase letters. The text below explains that the CACNA1D gene regulates calcium entry in tissues like the heart and brain. It describes how changes in this gene can lead to conditions such as hypoglycemia, hyperinsulinism, bradycardia, epilepsy, autism spectrum disorder, neurological delays, and difficulties with speech and walking. The message invites families and individuals with confirmed CACNA1D gene changes to join the CACNA1D community and provides a contact call-to-action. The VGCCC website, "thevgccc.org," is listed at the bottom. Small green stars are scattered around the unicorn.

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 06/03/2025

European Calcium Channel Conference 2025 Early registration and abstract submission are still open until March 10, 2025! For additional information, please visit the meeting website: calciumchannel.eu and for registration: calciumchannel.eu/registration... #calcium #channelopathies #ionchannels

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 06/03/2025

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 28/02/2025

Website launch Global network, amplifying the patient voice, driving research and treatment. This is a collaboration powered by passion, determination, and the pursuit of answers. #calcium #channelopathies #research #community #ionchannels #RareDiseaseDay #equity #raredisease

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 28/02/2025

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Reposted by The Voltage-Gated Calcium Channel Collective

Timothy Syndrome Alliance (TSA) @cacna1c.bsky.social · 05/02/2025

There is a global rare disease funding crisis. #RareDiseaseDay

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 09/01/2025

Can you help put research and rare disease in the spotlight?

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Reposted by The Voltage-Gated Calcium Channel Collective

The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 18/11/2024

The Voltage-Gated #Calcium Channel Collective - a #CACNA1A, #CACNA1B, #CACNA1C, #CACNA1D, #CACNA1E, #CACNA1F, #CACNA1G, #CACNA1H, #CACNA1I & #CACNA1S collaboration alongside researchers and clinicians raising awareness, accelerating knowledge, signposting and empowering our communities. #IonChannels

What is the VGCCC?
Voltage-Gated Calcium Channels act like doors on cells, opening when there's an electrical signal. They let calcium ions* flow in, helping with muscle movement, neurotransmission, and other important body functions.
The genes that represent the Voltage-Gated Calcium Channels are CACNA1A, CACNA1B, CACNA1C, CACNA1D, CACNA1E, CACNA1F, CACNA1G, CACNA1H, CACNA1I and CACNA1S.
In the same way the channels work together like a team to ensure proper cell communication and function, we are collaborating as patient gene groups with a network of researchers to raise awareness and accelerate knowledge for all our gene groups. We are the Voltage-Gated Calcium Channel Collective.

* Calcium ions are positively charged particles of calcium, an essential mineral found in the body.

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Reposted by The Voltage-Gated Calcium Channel Collective

Timothy Syndrome Alliance (TSA) @cacna1c.bsky.social · 21/11/2024

What if a compelling case for continued investment in #RareDisease #research and #support was told through the medium of film? Finalists are decided by public vote. Please support by voting: smileycharityfilmawards.com/films/connec... and share with your network connections. 🧬🦓 #RareDiseases

From a bright yellow background shouts the text "Research & rare diseases deserve the spotlight!" encouraging you to leave Bluesky momentarily and Vote for the film 'Connections' on the Smiley Charity Film Awards website.

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Reposted by The Voltage-Gated Calcium Channel Collective

Richard Barrett-Jolley @richardbj.bsky.social · 19/11/2024

May be a bit premature, but here is the Starter Pack I am trying to populate for #IonChannel research. Ping me and I’ll add you obviously! (Or to be removed) go.bsky.app/6taxHfx @jgenphysiol.bsky.social @auditorynerves.bsky.social @plesslab.bsky.social @rainbowlabuol.bsky.social

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 18/11/2024

Next #CACNA1E Family Meeting: 12 + 13 April 2025. www.cacna1e.org

Save the date:
CACNA1E Family meeting, Berlin, Germany 12+13 April 2025

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The Voltage-Gated Calcium Channel Collective @thevgccc.bsky.social · 18/11/2024

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