PVNH Support

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… #PVNH

Thank you to International League Against Epilepsy (@IlaeWeb) for the update!

📌 Important read about epileptic seizure classification. ilae.org/updated-classi… #RareEpilepsy #PVNH #GMH #SBH

Ful list here pvnhsupport.com/2024-world-pvn…

It's here!! @pvnhday !! Help us snap photos of illuminations, show your #pinkandyellow and share your stories!! #PVNH #PVNHloud #worldpvnhday #pvnhday #GMH #SBH #EpilepsyAwareness 🩷💛🩷

#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

@MarkELindsay Thank you for helping to bring awareness to X-linked PVNH/ FLNA deficiency lung disease! 🩷💛🩷

@ismailamehesen Congrats! Hope you'll join us for @PVNHday on Aug. 7! 🩷💛🩷

Big thanks to my amazing Global Alliance of Young Researchers team members and supporters! 👏 - Milad Shenno - Almonzer Al-Qiami - Lojin Elhaw - Abdulqadir Nashwan You can access the publication here: doi.org/10.1016/j.inat…

Thrilled to share that our manuscript, "A Rare Presentation of Bilateral Periventricular Nodular Heterotopia with Intra-axial Pontine Lesion: A Case Report and Treatment Approach," has been accepted and PUBLISHED! ❤️ ✨

@ismailamehesen Congrats! Would love to read it!

@com_at_une Would love to hear more!

Last month student doctor Sarah Khan, OMS 2, presented her abstract, "Potential New Genetic Variant in Periventricular Nodular Heterotopia," at the Massachusetts Neurologic Association Conference in Waltham, MA under the mentorship of Dr. Alexandra Filippakis.

Thank you for your support ! 🩷💛🩷

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

2/2 impacted your view on the PVNH, GMH, or SBH diagnosis you or your loved one lives with? #PVNH #GMH #SBH #Hope

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

@ShaineMorris1 @SaraStephens29 @TCHheartcenter @UTHealthSPH @DrKeilaLopez @plupo1 @DrKBSalc Congrats @SaraStephens29!

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

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

1/3 #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,