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

To the researchers & clinicians working tirelessly on this: THANK YOU 💜🩵💜

And to our community: you also have the chance to be part of this journey. By supporting research, you help discoveries like this one move closer to real treatments. This is how: bit.ly/MSMDS-Resear...

We feel proud, grateful, and hopeful 💜
✨ Proud of how far this journey has come
✨ Grateful to researchers & clinicians leading the way
✨ Hopeful because we are getting closer to therapies our children need

This is more than a step forward for MSMDS.
It’s a proof of concept that our rare disease can lead the way to treatments for other severe vascular diseases, like Moyamoya.
#vasculardiseases

Using a custom-built CRISPR–Cas9 base editor, researchers corrected the ACTA2 mutation in a mouse model, prolonging survival and rescuing disease features in the brain, aorta & blood vessels.

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

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 [email protected]

#ACTA2 #StrokeAwareness #TIAs

🫀🧬 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

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.

🧬 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

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

Very happy to be part of this initiative in the UK!

‼️Must follow for vascular health specialists around the globe.

#VascularHealth #Vascular #CommunityGrowth

The 2025 MSMDS Conference recordings are live on YouTube!

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

#ACTA2 #MSMDS #RareDisease #GeneticDisease #VascularDisease #PediatricStroke #AorticDissection #Mydriasis