v-ATPase Alliance
@vatpasealliance.org
Empower and unite families affected by v-ATPase genetic disorders
Advance Scientific Research on v-ATPase. Ultimately get a Cure!
🧬 Several ATP6V- genes
Advance Scientific Research on v-ATPase. Ultimately get a Cure!
🧬 Several ATP6V- genes
The v-ATPase Voice - the official v-ATPase Alliance Newsletter - is Out, check the latest content and share with your contacts. Help us spread awareness. mailchi.mp/8ce5f1be5f59...
Not subscribed?
Subscribe here: eepurl.com/iHW3S-/
Not subscribed?
Subscribe here: eepurl.com/iHW3S-/
Helping v-ATPase families. Get to know and support them. Visit www.vatpasealliance.org
Get involved!
mailchi.mp
August 7, 2025 at 10:01 PM
The v-ATPase Voice - the official v-ATPase Alliance Newsletter - is Out, check the latest content and share with your contacts. Help us spread awareness. mailchi.mp/8ce5f1be5f59...
Not subscribed?
Subscribe here: eepurl.com/iHW3S-/
Not subscribed?
Subscribe here: eepurl.com/iHW3S-/
On this #WarriorWednesday we pause to honor four extraordinary children whose lives continue to guide and inspire our mission: Avril, Hawke, Remington and Izabella.
🕊️ Forever warriors. Forever remembered. Forever a part of the Alliance 🤍
🕊️ Forever warriors. Forever remembered. Forever a part of the Alliance 🤍
July 30, 2025 at 7:35 PM
On this #WarriorWednesday we pause to honor four extraordinary children whose lives continue to guide and inspire our mission: Avril, Hawke, Remington and Izabella.
🕊️ Forever warriors. Forever remembered. Forever a part of the Alliance 🤍
🕊️ Forever warriors. Forever remembered. Forever a part of the Alliance 🤍
We are halfway there, but need your help!
We're running the #20for20 Campaign, aiming for 20 biosample collections. You might wonder: why aren't 10 enough? Why is 20 the golden number? Let us shed some light on that!
Donate: donorbox.org/20-for-20-78...
We're running the #20for20 Campaign, aiming for 20 biosample collections. You might wonder: why aren't 10 enough? Why is 20 the golden number? Let us shed some light on that!
Donate: donorbox.org/20-for-20-78...
July 29, 2025 at 5:16 PM
We are halfway there, but need your help!
We're running the #20for20 Campaign, aiming for 20 biosample collections. You might wonder: why aren't 10 enough? Why is 20 the golden number? Let us shed some light on that!
Donate: donorbox.org/20-for-20-78...
We're running the #20for20 Campaign, aiming for 20 biosample collections. You might wonder: why aren't 10 enough? Why is 20 the golden number? Let us shed some light on that!
Donate: donorbox.org/20-for-20-78...
July 25, 2025 at 10:56 PM
Today is v-ATpase Awareness Day!
v-ATPase it matters! Kids like Lana matter!
Thank you for helping raising Awareness with your own voice in English and Russian. What a mighty warrior!
Comment, Share and Care.
Get involved: vatpasealliance.org/get-involved
v-ATPase it matters! Kids like Lana matter!
Thank you for helping raising Awareness with your own voice in English and Russian. What a mighty warrior!
Comment, Share and Care.
Get involved: vatpasealliance.org/get-involved
July 24, 2025 at 12:36 AM
Today is v-ATpase Awareness Day!
v-ATPase it matters! Kids like Lana matter!
Thank you for helping raising Awareness with your own voice in English and Russian. What a mighty warrior!
Comment, Share and Care.
Get involved: vatpasealliance.org/get-involved
v-ATPase it matters! Kids like Lana matter!
Thank you for helping raising Awareness with your own voice in English and Russian. What a mighty warrior!
Comment, Share and Care.
Get involved: vatpasealliance.org/get-involved
Today is v-ATPase Awareness Day! We're highlighting the 23 genes of this vital pump. Its malfunction causes severe multi-system disorders & DEEs in kids, but studying it also offers key insights into fighting cancer, neurodegeneration, & promoting healthy aging.
v-ATPase: it matters! #AwarenessDay
v-ATPase: it matters! #AwarenessDay
July 23, 2025 at 5:19 PM
Today is v-ATPase Awareness Day! We're highlighting the 23 genes of this vital pump. Its malfunction causes severe multi-system disorders & DEEs in kids, but studying it also offers key insights into fighting cancer, neurodegeneration, & promoting healthy aging.
v-ATPase: it matters! #AwarenessDay
v-ATPase: it matters! #AwarenessDay
New Series coming up later this month:
"Roadmap to a Cure: Navigating the Path for v-ATPase-related conditions" and many other rare genetic disorders!
#vATPaseAlliance #RoadmapToACure #RareDiseaseResearch #HopeForACure #BreakthroughsAhead #PatientAdvocacy
"Roadmap to a Cure: Navigating the Path for v-ATPase-related conditions" and many other rare genetic disorders!
#vATPaseAlliance #RoadmapToACure #RareDiseaseResearch #HopeForACure #BreakthroughsAhead #PatientAdvocacy
June 13, 2025 at 9:59 PM
New Series coming up later this month:
"Roadmap to a Cure: Navigating the Path for v-ATPase-related conditions" and many other rare genetic disorders!
#vATPaseAlliance #RoadmapToACure #RareDiseaseResearch #HopeForACure #BreakthroughsAhead #PatientAdvocacy
"Roadmap to a Cure: Navigating the Path for v-ATPase-related conditions" and many other rare genetic disorders!
#vATPaseAlliance #RoadmapToACure #RareDiseaseResearch #HopeForACure #BreakthroughsAhead #PatientAdvocacy
There's More to the Story is an Educational Program from v-ATPase Alliance a 501(C)(3) Nonprofit commited to bring positive change to those living with ultra rare diseases.
Learn more and support our vision at www.vatpasealliance.org
Learn more and support our vision at www.vatpasealliance.org
June 6, 2025 at 2:59 PM
There's More to the Story is an Educational Program from v-ATPase Alliance a 501(C)(3) Nonprofit commited to bring positive change to those living with ultra rare diseases.
Learn more and support our vision at www.vatpasealliance.org
Learn more and support our vision at www.vatpasealliance.org
Community Update!
We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia!
Help us reach more families and potential partners by sharing this post
#vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare
We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia!
Help us reach more families and potential partners by sharing this post
#vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare
June 6, 2025 at 2:47 PM
Community Update!
We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia!
Help us reach more families and potential partners by sharing this post
#vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare
We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia!
Help us reach more families and potential partners by sharing this post
#vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare
Endosome map reveals v-ATPase IS the ultimate connector!
The biological pathways or functions these proteins influence may ultimately have a more significant impact!
Article here: www.nature.com/articles/s41...
The biological pathways or functions these proteins influence may ultimately have a more significant impact!
Article here: www.nature.com/articles/s41...
June 3, 2025 at 9:31 AM
Endosome map reveals v-ATPase IS the ultimate connector!
The biological pathways or functions these proteins influence may ultimately have a more significant impact!
Article here: www.nature.com/articles/s41...
The biological pathways or functions these proteins influence may ultimately have a more significant impact!
Article here: www.nature.com/articles/s41...
Reposted by v-ATPase Alliance
@Ana Rita Moreira of the REN member @vatpasealliance.org shared her moving advocacy story, "Don't Let the Light Go Out," with the @Epilepsy Foundation's Foundation Quarterly Spring 2025. The energy and determination of their community is contagious.
www.flipsnack.com/epilepsyfoun...
www.flipsnack.com/epilepsyfoun...
Foundation Quarterly Spring 2025
Flipsnack is a digital catalog maker that makes it easy to create, publish and share html5 flipbooks. Upload a PDF or design from scratch flyers, magazines, books and more.
www.flipsnack.com
May 21, 2025 at 3:38 PM
@Ana Rita Moreira of the REN member @vatpasealliance.org shared her moving advocacy story, "Don't Let the Light Go Out," with the @Epilepsy Foundation's Foundation Quarterly Spring 2025. The energy and determination of their community is contagious.
www.flipsnack.com/epilepsyfoun...
www.flipsnack.com/epilepsyfoun...
Understanding the genetic complexity of v-ATPase DEE is crucial for diagnosis and treatment. See the gene comparison table: ATP6V0A1, ATP6V1A, ATP6V0C. #vATPase #Neurology #RareDisease #Diagnosis #GetToKnowMore
April 16, 2025 at 1:13 PM
Understanding the genetic complexity of v-ATPase DEE is crucial for diagnosis and treatment. See the gene comparison table: ATP6V0A1, ATP6V1A, ATP6V0C. #vATPase #Neurology #RareDisease #Diagnosis #GetToKnowMore
v-ATPase is a multi-subunit enzyme complex, a proton pump, that is expressed in various cellular membranes throughout the body, including lysosomes, endosomes, and plasma membranes #GetToKnowMore
April 14, 2025 at 6:12 PM
v-ATPase is a multi-subunit enzyme complex, a proton pump, that is expressed in various cellular membranes throughout the body, including lysosomes, endosomes, and plasma membranes #GetToKnowMore
Disease detectives, assemble! 🔍
The new 💚 "Get to know more about v-ATPase" campaign aims to drive awareness of v-ATPase-related diseases and emphasize that gene testing is essential for accurate diagnosis and effective treatment of v-ATPase-related disorders. Stay tuned!
The new 💚 "Get to know more about v-ATPase" campaign aims to drive awareness of v-ATPase-related diseases and emphasize that gene testing is essential for accurate diagnosis and effective treatment of v-ATPase-related disorders. Stay tuned!
April 14, 2025 at 4:43 PM
Disease detectives, assemble! 🔍
The new 💚 "Get to know more about v-ATPase" campaign aims to drive awareness of v-ATPase-related diseases and emphasize that gene testing is essential for accurate diagnosis and effective treatment of v-ATPase-related disorders. Stay tuned!
The new 💚 "Get to know more about v-ATPase" campaign aims to drive awareness of v-ATPase-related diseases and emphasize that gene testing is essential for accurate diagnosis and effective treatment of v-ATPase-related disorders. Stay tuned!
Reposted by v-ATPase Alliance
On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase.
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org
February 28, 2025 at 3:39 AM
On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase.
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org
⚠️ SIGN TODAY!!! Rare Disease community petition for steady and robust federal agency leadership, Federal Biomedical Research Funding, and Public Health Agency Support! It will be sent to members of Congress tomorrow #RareDiseaseDay!
everylifefoundation.org/national-rar...
@everylifeorg.bsky.social
everylifefoundation.org/national-rar...
@everylifeorg.bsky.social
You are being redirected...
everylifefoundation.org
February 27, 2025 at 10:35 PM
⚠️ SIGN TODAY!!! Rare Disease community petition for steady and robust federal agency leadership, Federal Biomedical Research Funding, and Public Health Agency Support! It will be sent to members of Congress tomorrow #RareDiseaseDay!
everylifefoundation.org/national-rar...
@everylifeorg.bsky.social
everylifefoundation.org/national-rar...
@everylifeorg.bsky.social
Tomorrow, February 28th, we are hosting a Global Rare Disease Day on Zoom.
Sign up here, don't miss the fun! us06web.zoom.us/meeting/regi...
Sign up here, don't miss the fun! us06web.zoom.us/meeting/regi...
Welcome! You are invited to join a meeting: Rare Disease Day - v-ATPase Community Meet Up!. After registering, you will receive a confirmation email about joining the meeting.
Get ready to show your stripes! - Rare Disease Day is this Friday, February 28th! -
Let's unite and #WearYourStripes in support of the entire rare disease community! -
Join us for a worldwide celebrat...
us06web.zoom.us
February 27, 2025 at 10:28 PM
Tomorrow, February 28th, we are hosting a Global Rare Disease Day on Zoom.
Sign up here, don't miss the fun! us06web.zoom.us/meeting/regi...
Sign up here, don't miss the fun! us06web.zoom.us/meeting/regi...
Tomorrow, Feb 27th, we will be at the #Texas Children's Hospital from 9am-4pm CST
Stop by, say hello, and help make a difference! 🙌
#RareDiseaseDay2025 event with #NORD / Center of Excellence at Baylor College of Medicine (BCM) / Baylor St. Luke’s Medical Center (BSLMC) in the Texas Medical Center.
Stop by, say hello, and help make a difference! 🙌
#RareDiseaseDay2025 event with #NORD / Center of Excellence at Baylor College of Medicine (BCM) / Baylor St. Luke’s Medical Center (BSLMC) in the Texas Medical Center.
February 26, 2025 at 11:10 PM
Tomorrow, Feb 27th, we will be at the #Texas Children's Hospital from 9am-4pm CST
Stop by, say hello, and help make a difference! 🙌
#RareDiseaseDay2025 event with #NORD / Center of Excellence at Baylor College of Medicine (BCM) / Baylor St. Luke’s Medical Center (BSLMC) in the Texas Medical Center.
Stop by, say hello, and help make a difference! 🙌
#RareDiseaseDay2025 event with #NORD / Center of Excellence at Baylor College of Medicine (BCM) / Baylor St. Luke’s Medical Center (BSLMC) in the Texas Medical Center.
Have you ever found yourself staring at a Google search bar, the weight of the world pressing down on your shoulders, desperately trying to decipher how to find the right support for your child?
Try www.librarey.com A collaborative resource for rare diseases. Find support and share knowledge.
Try www.librarey.com A collaborative resource for rare diseases. Find support and share knowledge.
February 24, 2025 at 10:46 PM
Have you ever found yourself staring at a Google search bar, the weight of the world pressing down on your shoulders, desperately trying to decipher how to find the right support for your child?
Try www.librarey.com A collaborative resource for rare diseases. Find support and share knowledge.
Try www.librarey.com A collaborative resource for rare diseases. Find support and share knowledge.
The RARE Advocacy Exchange kicks off on March 10th at 1 PM EST. A year long virtual patient summit!
🌟 We've already signed up; will you join us?
📌 Register here: globalgenes.org/rare-advocac...
🌟 We've already signed up; will you join us?
📌 Register here: globalgenes.org/rare-advocac...
February 6, 2025 at 4:05 PM
The RARE Advocacy Exchange kicks off on March 10th at 1 PM EST. A year long virtual patient summit!
🌟 We've already signed up; will you join us?
📌 Register here: globalgenes.org/rare-advocac...
🌟 We've already signed up; will you join us?
📌 Register here: globalgenes.org/rare-advocac...
Interesting paper that provides a good overview of the key factors, beyond cost, that funders should consider when developing their Programs and Policies. #OpenScience
www.biorxiv.org/content/10.1...
www.biorxiv.org/content/10.1...
www.biorxiv.org
February 5, 2025 at 6:35 PM
Interesting paper that provides a good overview of the key factors, beyond cost, that funders should consider when developing their Programs and Policies. #OpenScience
www.biorxiv.org/content/10.1...
www.biorxiv.org/content/10.1...
Punxsutawney Phil predicts six more weeks of winter ☃️🧣🧤
We’ve got you covered!
With 2 NEW hoodie options to Care About RARE!
Orders close in 3 days: Friday, February 7th!
www.customink.com/fundraising/...
#GroundhogDay #RareDiseaseAwareness #RareDiseaseDay
We’ve got you covered!
With 2 NEW hoodie options to Care About RARE!
Orders close in 3 days: Friday, February 7th!
www.customink.com/fundraising/...
#GroundhogDay #RareDiseaseAwareness #RareDiseaseDay
February 4, 2025 at 11:37 PM
Punxsutawney Phil predicts six more weeks of winter ☃️🧣🧤
We’ve got you covered!
With 2 NEW hoodie options to Care About RARE!
Orders close in 3 days: Friday, February 7th!
www.customink.com/fundraising/...
#GroundhogDay #RareDiseaseAwareness #RareDiseaseDay
We’ve got you covered!
With 2 NEW hoodie options to Care About RARE!
Orders close in 3 days: Friday, February 7th!
www.customink.com/fundraising/...
#GroundhogDay #RareDiseaseAwareness #RareDiseaseDay
Support v-ATPase research! Buy a "Care About Rare" shirt (proceeds benefit research) or donate while you wear your stripes on Feb 28th. Every contribution helps advance treatments. 🦓🧬
www.customink.com/fundraising/care-about-rare2025
#vatpase #careaboutrare #showyourstripes #rarediseasemonth
www.customink.com/fundraising/care-about-rare2025
#vatpase #careaboutrare #showyourstripes #rarediseasemonth
Care about Rare, and Wear your support for v-ATPase Alliance, Supporting v-ATPase Alliance, Inc.
Rare Disease Day is coming up on February 28th! Pre-order your shirt so you can show that you #careaboutrare and every child affected by v-ATPase disorders. v-ATPase Alliance is a 501(c)(3) nonprofit ...
www.customink.com
February 3, 2025 at 6:24 PM
Support v-ATPase research! Buy a "Care About Rare" shirt (proceeds benefit research) or donate while you wear your stripes on Feb 28th. Every contribution helps advance treatments. 🦓🧬
www.customink.com/fundraising/care-about-rare2025
#vatpase #careaboutrare #showyourstripes #rarediseasemonth
www.customink.com/fundraising/care-about-rare2025
#vatpase #careaboutrare #showyourstripes #rarediseasemonth
Spinning like crazy 😝
Visualizing Single V-ATPase Rotation Using Janus Nanoparticles
pubs.acs.org/doi/full/10....
pubs.acs.org/doi/full/10....
Visualizing Single V-ATPase Rotation Using Janus Nanoparticles
Understanding the function of rotary molecular motors, such as rotary ATPases, relies on our ability to visualize single-molecule rotation. Traditional imaging methods often involve tagging those mot...
pubs.acs.org
February 1, 2025 at 9:56 PM
Spinning like crazy 😝