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thevgccc.bsky.social
The Voltage-Gated Calcium Channel Collective
@thevgccc.bsky.social
420 followers 130 following 16 posts
Raising awareness & promoting collaboration across the #calcium #channelopathies. Composed of caregivers & individuals impacted by the channelopathies, alongside researchers and clinicians focused on the 10 calcium genes. https://www.thevgccc.org
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Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
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
June 17, 2025 at 12:34 PM
thevgccc.bsky.social
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
June 17, 2025 at 12:34 PM
thevgccc.bsky.social
#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
May 22, 2025 at 2:03 PM
thevgccc.bsky.social
#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.
May 9, 2025 at 5:00 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
#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.
May 2, 2025 at 1:26 PM
thevgccc.bsky.social
#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.
May 2, 2025 at 1:26 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
#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.
April 8, 2025 at 9:20 AM
thevgccc.bsky.social
#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.
April 8, 2025 at 9:20 AM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
#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.
April 1, 2025 at 10:50 AM
thevgccc.bsky.social
#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.
April 1, 2025 at 10:50 AM
thevgccc.bsky.social
#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.
March 18, 2025 at 5:57 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
#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.
March 11, 2025 at 3:01 PM
thevgccc.bsky.social
#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.
March 11, 2025 at 3:01 PM
thevgccc.bsky.social
#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.
March 7, 2025 at 3:29 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
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
March 6, 2025 at 3:11 PM
thevgccc.bsky.social
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
March 6, 2025 at 3:11 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
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
A celebratory announcement graphic with a deep purple background. The text 'We are live now' is written in white cursive with two firework-like spark designs on either side. Below, in smaller white text, it says 'Check out our new website.' The image features a stylized browser window displaying the URL 'https://thevgccc.org.' Inside the browser window is the VGCCC logo, which includes a purple DNA helix between two black vertical bars, with the text 'VGCCC - Voltage-Gated Calcium Channel Collective' beneath it. The browser window has a green frame.
February 28, 2025 at 1:05 PM
thevgccc.bsky.social
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
A celebratory announcement graphic with a deep purple background. The text 'We are live now' is written in white cursive with two firework-like spark designs on either side. Below, in smaller white text, it says 'Check out our new website.' The image features a stylized browser window displaying the URL 'https://thevgccc.org.' Inside the browser window is the VGCCC logo, which includes a purple DNA helix between two black vertical bars, with the text 'VGCCC - Voltage-Gated Calcium Channel Collective' beneath it. The browser window has a green frame.
February 28, 2025 at 1:05 PM
Reposted by The Voltage-Gated Calcium Channel Collective
cacna1c.bsky.social
There is a global rare disease funding crisis.
#RareDiseaseDay
February 5, 2025 at 10:15 PM
thevgccc.bsky.social
Can you help put research and rare disease in the spotlight?
cacna1c.bsky.social Timothy Syndrome Alliance (TSA) @cacna1c.bsky.social · Jan 8
Rare disease research thrives on connections.

We need your help reaching the judging stage. Shortlisting depends on votes, and as a rare disease, our reach is small.

Can you help by voting? (and watching obvs)

smileycharityfilmawards.com/films/connec...
Connections
In this film, a collaboration between the Timothy Syndrome Alliance (TSA) and Cardiff University, we explore the importance of connections between…
smileycharityfilmawards.com
January 9, 2025 at 12:06 PM
Reposted by The Voltage-Gated Calcium Channel Collective
thevgccc.bsky.social
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.
November 18, 2024 at 3:17 PM
Reposted by The Voltage-Gated Calcium Channel Collective
cacna1c.bsky.social
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.
November 21, 2024 at 5:27 PM
Reposted by The Voltage-Gated Calcium Channel Collective
richardbj.bsky.social
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
November 19, 2024 at 2:26 PM
thevgccc.bsky.social
Next #CACNA1E Family Meeting: 12 + 13 April 2025.
www.cacna1e.org
Save the date: CACNA1E Family meeting, Berlin, Germany 12+13 April 2025
November 18, 2024 at 3:28 PM
thevgccc.bsky.social
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.
November 18, 2024 at 3:17 PM