Thanks to our ACTA2 & MSMDS community, we’re close to our $30K goal for the Natural History Study. THANK YOU! Together, we go further. Follow the link to check how far we are www.zeffy.com/en-US/peer-t...

Created by Lily’s family just months after diagnosis, they’ve already taken action to support others. It’s been a privilege to walk alongside them and see this grow. Follow ACTA2 alliance UK 👐 Facebook facebook.com/share/1CjnMo... Instagram: instagram.com/acta2allianc...

So far in 2026, we've been raising awareness, driving early diagnosis, at ACMG, AAPOS & CHOP conferences. Very grateful to everyone who made it possible!

The Vascular Voice Network has launched it's brand new Vascular Condition Directory 📢 Visit the webpage at vascularvoice.org/vascular-con... to be signposted to trusted sources of information and support 🤝 @aorticdissectct.bsky.social @acta2alliance.bsky.social @marfantrust.bsky.social

No one understands MSMDS like another family. Join the MSMDS Family Circle – next meeting April 9th 🗓️ www.acta2alliance.org/msmds-family... 💙 #MSMDS #RareDisease

At #ACMGtg26, we connected with 3,000+ providers and spoke with 100+ about #ACTA2 & #MSMDS. Huge thanks to the amazing team making this possible 👏💙 #RareDisease #Genetics @theacmg.bsky.social

Today is #RareDiseaseDay 💜 This month we highlighted key diagnoses associated with MSMDS: From congenital heart defects to Moyamoya and pediatric stroke. Thank you to our community for sharing and amplifying awareness. Early recognition changes outcomes. #ACTA2 #MSMDS

#RareDiseaseDay2026 www.vascularvoice.org

Ahead of #RareDiseaseDay, we highlight pediatric stroke in MSMDS. Vascular smooth muscle dysfunction can lead to early brain injury. Awareness is key. @thestrokeassoc.bsky.social @ameracadpeds.bsky.social @childneurosoc.bsky.social

MSMDS often presents with Moyamoya-like arteriopathy. Early recognition is key to timely diagnosis and intervention. #ACTA2 @moyamoyashi02.bsky.social

With 3 days to #RareDiseaseDay, we highlight Prune Belly Syndrome, often an early sign in babies with MSMDS, alongside PDA, APW or pulmonary hypertension. #ACTA2 #MSMDS #PruneBelly #EagleBarrett @prunebellyadvocate.bsky.social

Pulmonary arterial hypertension (PAH) is a common early diagnosis in MSMDS, often identified around PDA or APW repair after birth. PAH is also a rare disease (1–9/100,000). #RareDiseaseMonth #ACTA2

New research shows that ACTA2 smooth muscle dysfunction leads to baseline failure of cerebrovascular reserve, reducing cerebral blood flow and increasing vulnerability to brain injury www.biorxiv.org/content/10.6... @biorxiv-neursci.bsky.social #MSMDS #ACTA2 #MSMDS #BrainHealth #RareDiseaseResearch

FTAAD is often associated with ACTA2-related conditions, including MSMDS. Awareness is key to earlier recognition and care. @aorticdissectct.bsky.social @aorticdisorders.bsky.social @ediaorticsummit.bsky.social @aortauricle.bsky.social #MusculoLiso #ConnectiveDisorders

Today, on CHD Awareness Day, we share our first Rare Disease Month post. PDA or APW can be early clues of MSMDS. Please help us spread the word. #ACTA2 #CHDAwarenessDay

We’re excited to launch the MSMDS Family Circle: a new space for MSMDS families to connect, share, and support one another. First meeting Feb 28! Please share far and wide so every family can join us. www.acta2alliance.org/msmds-family... #MSMDS #ACTA2 #SmoothMuscle #MusculoLiso

Docs normally avoid hypotensive agents and AV node blockers (also calcium channel blockers) in MSMDS: poor cerebral autoregulation= ⬆️ risk of syncope and stroke. Hypotensive agents prevent patients with MSMDS from increasing their heart rate when needed. #ACTA2 www.nature.com/articles/s41...

Research update! A recently article in @jci.org study shows that GI dysmotility in MSMDS is driven mainly by smooth muscle dysfunction, not by gut nerves. These findings open the door to mechanism-based and genome editing therapies to restore gut function. #ACTA2 🔗 insight.jci.org/articles/vie...

A Christmas gift from our kids to you 🎄 Many languages, many smiles, one shared wish. Help it travel far, and let’s wish together for a 2026 with effective treatments for children with MSMDS. ✨ #ACTA2 #MSMDS #SmoothMuscle

What an amazing community we have! $10K+ raised since Nov 24 for MSMDS and ACTA2 research 🎉 If you’d like to be part of the final push in 2025, we’d welcome it 🤗 www.acta2alliance.org/support_MSMD... #ACTA2 #RareDisease #SmoothMuscle

It’s #GivingTuesday. If you’d like to support MSMDS/ACTA2 research, our Year-End campaign is open. Your help keeps studies moving: www.zeffy.com/en-US/donati... #ACTA2 #MSMDS

‼️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

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

youtube.com

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 msmds@acta2alliance.org #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

Imelda Black@imeldab.bsky.social · last yr.

💚 📣 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