From Feb. 1 to March 15, PVNH Support & Awareness is participating in the Rare Carousel of Possible Dreams and raising funds, along with Global Genes and the Festival of Children Foundation for PVNH research!! Join our team and/or donate now on our PVNH Team page.
And don’t forget that starting March 1st, we celebrate PVNH Awareness Month!! #MarchOnPVNH
PVNH stands for Periventricular Nodular Heterotopia. Sometimes referred to grey matter heterotopia. And also as PNH is medical journals. It is a rare neuronal migration disorder which is also known as BPH, BPNH, PNH, PVH, subependymal heterotopia or GMH. It can includes a variant, PVNH with Ehlers Danlos syndrome, otherwise known as PVNH4. There is also a form of neuronal heterotopia disorder called Sub-cortical Band Heterotopia, also known as Double Cortex.
PVNH Support & Awareness proudly works with more than 400 families in 32 countries and collaborates with world’s specialists, researchers, rare disease organisations and other groups of interests to make a positive impact in the lives of those affected by these disorders.
PVNH Support & Awareness TM is a nonprofit organization of international reach which collaborates with PVNH genetic leaders, specialists, researchers. We also have alliances with some of the most outstanding rare disease advocates worldwide. PVNH Support & Awareness TM was founded in November 2009 as a legacy for my daughter, Ella Dupont Bedassie. Ella was 7 months and 20 days when she passed away from respiratory failure brought on by what we did not know at the time was a rare disease: X-Linked Periventricular Nodular Heterotopia, with Ehlers Danlos syndrome (PVNH4).
PVNH Support & Awareness TM exists to give affected patients and families a gathering place and to educate patients, families as well as medical and other communities about PVNH and other neuronal heteropia disorders.
This is for Ella, so that her death is not in vain and her memory keeps on living, forever.