International community for Periventricular Nodular Heterotopia(PVNH),GMH,SBH disorders. Unite.Educate.Research. Find a cure. #PVNH#FLNA#MarchOnPVNH @PVNHday
Connection • Learning • Hope
⚠️ Early RSVP is now open and space will be limited.
Reserve your spot today:
2026 International Neuronal Heterotopia Conference RSVP | Unite. Educate. Advocate. Find A Cure. https://t.co/CdM4gPcGPW
#PVNH#GMH#SBH#RareDisease#NeuronalHeterotopia
It's official! RSVP now to save your spot!! WE’RE MEETING AGAIN
🩷💛💜💛🩷
Join families, adults, researchers, clinicians and advocates from around the world for the 2026 International Neuronal Heterotopia Conference.
🧠 PVNH • GMH • SBH
📍 Montréal, Québec,
📅 October 17–19
Super excited to release a new episode of our #podcast Misplaced Neurons, featuring Sarah Ayala and her daughter Elani, on this #MarchOnPVNH Monday. Thank you Sarah for your advocacy, your raw honesty and for being the wonderful mom you are!
https://t.co/nTjOh90ltK
#PVNH
#PeriventricularNodularHeterotopia (#PVNH) is a developmental brain disorder that causes learning disabilities and #seizures. This happens when nerve cells abnormally clump around the brain's ventricles.
There are still too many babies affected by PVNH / FLNA deficiency lung disease that do not survive. It breaks our hearts. Hopefully, the parents got the support they need. We are so sorry for their immense loss. We'll always be there for support.
#FLNAlungdisease
1/2 #MarchOnPVNH
It is fitting we end this month on hope. Hope is the one thing we all have that carries us through the hard days. Hope of relief for our afflicted loved ones, hope for greater research and answers, and hope for an eventual cure. How has hope for the future