International community for Periventricular Nodular Heterotopia(PVNH),GMH,SBH disorders. Unite.Educate.Research. Find a cure. #PVNH #FLNA #MarchOnPVNH @PVNHday
Joined January 2012
- Tweets 748
- Following 1,314
- Followers 454
- Likes 829
147 Photos and videos
May 10
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
1
1
45
May 10
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. share.google/4Vb7VQiNOeDqR5s…
#PVNH #GMH #SBH #RareDisease #NeuronalHeterotopia
70
Mar 16
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!
youtu.be/L-2obfjRi98?si=bFgW…
#PVNH
1
1
2
44
24 Apr 2025
📌 Important read about epileptic seizure classification.
ilae.org/updated-classificat…
#RareEpilepsy
#PVNH
#GMH
#SBH
1
1
35
7 Aug 2024
It's here!!
@pvnhday !! Help us snap photos of illuminations, show your #pinkandyellow and share your stories!!
#PVNH #PVNHloud #worldpvnhday #pvnhday
#GMH #SBH #EpilepsyAwareness
🩷💛🩷
1
1
1
101
PVNH Support retweeted
#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.
1
3
135
6 Aug 2024
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
42
6 Aug 2024
Thank you for your support !
🩷💛🩷
4 Aug 2024
#MISSISSAUGA Clock Tower Lighting: World PVNH Day mississauga.canadiary.com/20…
29
1 Aug 2024
Will you join in and wear pink and/or yellow in support of impacted families, and ask us about World PVNH Day, PVNH, GMH, and SBH?
🩷💛🩷
#BecauseWeCan
25
31 Mar 2024
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
1
60
28 Mar 2024
1/3 #MarchOnPVNH
Awareness & Advocacy
Raising awareness for PVNH, GMH and SBH is critical for a number of reasons : 1) quicker diagnosis 2) improved care and 3) the ultimate goal of funding research for a cure! As adults affected or parents of children affected by the disorder,
1
49
28 Mar 2024
2/3 we constantly advocate for ourselves and our children, whether for recognition of symptoms, care solutions, or for therapy, services, medical needs and more. We raise awareness to tese disorders so others don’t have to start from square one like many families do. It also
1
22
28 Mar 2024
3/3 brings comfort and greater resources for others struggling and their families. Share your experiences in advocating for yourself or your loved one with PVNH, GMH or SBH and how you bring awareness! #PVNH #GMH #SBH #Awareness #Advocacy
32
27 Mar 2024
Remebering our Angels. Gone to soon. Never forgotten. Forever loved to infinity. instagram.com/reel/C5CLhT1Mr…
18
27 Mar 2024
1/7 #MarchOnPVNH - Angels
What comes to mind when you hear the word 'angel'? A winged person watching over you from Heaven? A child behaving so sweetly? A person, an organization or a group of people here on earth that has come to your rescue or is helping you in some way though
1
32
27 Mar 2024
6/7 time: fellow epilepsy and rare disorder leaders and organizations, experts, doctors, nurses, specialists, collaborators, researchers, genetic labs, media outlets, illuminating partners, & so many more around the world. And not to forget, our own PVNH Community members! Share
1
20