ACTA2 Alliance
banner
acta2alliance.bsky.social
ACTA2 Alliance
@acta2alliance.bsky.social
Supporting families living with Multisystemic Smooth Muscle Dysfunction Syndrome #MSMDS #UltraRare #ACTA2 mutation https://www.zeffy.com/en-US/donation-form/6944a133-de97-4680-8675-ad6847c2d369
‼️The ACTA2 & MSMDS Literature Library has been updated with the latest research articles. If you know of any information missing, please send it our way so we can add it.

docs.google.com/spreadsheets...

#ACTA2 #MSMDS #RareDisease #Research
November 7, 2025 at 10:20 AM
We’ve had a busy September, where we also found time to raise awareness. One of our founders, Dixie Anderson, shared her story on Bedford TV, a reminder of why this work matters.🎥 Watch it here www.youtube.com/watch?v=rile... #MSMDS #ACTA2 #UltraRare #RareDiseaseAwareness #RareDisease #Massachusetts
Celebrate Life - Lydia Anderson
YouTube video by Bedford TV, MA
www.youtube.com
October 9, 2025 at 2:32 PM
Back in June, at our MSMDS conference, we shared how researchers were advancing their work on gene editing for ACTA2 R179H.

Today, we can celebrate that this effort is now peer-reviewed & published in @nature.com! 🎉
t.co/6WjTMRnAOi

#MSMDS #ACTA2 @markelindsay.bsky.social @bkleinstiver.bsky.social
https://bit.ly/gene_therapy_R179H
t.co
September 12, 2025 at 1:12 PM
September is a fresh start but for Riley, it means rehab post brain surgery, 1 yr after her first TIA. Read more: facebook.com/profile.php?...

To make revascularization safer for kids with MSMDS, docs/families reach out with your experience to msmds@acta2alliance.org

#ACTA2 #StrokeAwareness #TIAs
Redirecting...
facebook.com
September 11, 2025 at 12:57 PM
Reposted by ACTA2 Alliance
🫀🧬 Calling cardiologists & CVGCs! Phase I of my PhD interviewed 27 experts on medical & family history guiding genetic testing & best practices. Phase II: Delphi survey to build consensus. All experience levels welcome! Complete the intake form if interested: forms.office.com/r/UwMzwUFUGL
September 11, 2025 at 12:50 AM
For #VascularDiseaseAwarenessMonth we shed light on ACTA2 mutations. They weaken vessels, causing strokes & dissections. 👨‍👩‍👧‍👦ACTA2 Alliance supports families & research and has now join the UK’s Vascular Voice Network vascularvoice.org💜 to make our voices stronger, together.
September 11, 2025 at 8:50 AM
🧬 The MSMDS Patient Registry is live!

Built with families, experts & @SanfordResearch, it’s a powerful step to advance research & care.

Join, share, and learn more: www.acta2alliance.org/multisystemi...

#MSMDS #ACTA2 #PatientRegistry
July 8, 2025 at 6:45 PM
Reposted by ACTA2 Alliance
Vessels of the brain🧠 are enveloped by alpha-smooth muscle actin that have a rubber-band like appearance. These bands contract or dilate based on the neural load.
@urneuroscience.bsky.social @cvsuor.bsky.social @flaumeye.bsky.social @uofrbme.bsky.social #FluorescenceFriday
May 23, 2025 at 4:58 PM
Very happy to be part of this initiative in the UK!

‼️Must follow for vascular health specialists around the globe.

#VascularHealth #Vascular #CommunityGrowth
💚 📣 We've launched the Vascular Voice Network landing page 📣 💚

vascularvoice.org

Visit our webpage and join us on our journey to connect organisations and individuals across the wider vascular community 🟢.
@acta2alliance.bsky.social @aorticdissectct.bsky.social @ehlersdanlos.bsky.social
Vascular Voice Network
Connecting patients, charities, clinicians, researchers, and system leaders around the shared goal of improving care for people with vascular conditions.
vascularvoice.org
July 2, 2025 at 9:53 AM
The 2025 MSMDS Conference recordings are live on YouTube!

📼Watch, learn, and share: bit.ly/2025Conferen...

#ACTA2 #MSMDS #RareDisease #GeneticDisease #VascularDisease #PediatricStroke #AorticDissection #Mydriasis
July 2, 2025 at 9:51 AM