A local Vancouver, BC event for #PVNHday on August 7 will take place at the Regal Beagle in Kits from 6:30pm – 8:30pm. There will be a silent auction to raise funds for PVNH research. Until August 10, $1 from each pint of Okanagan Spring 1516 sold will also be donated to PVNH research.
Our next World PVNH Conference will be held in Glasgow, UK in early June 2015!
PVNH stands for Periventricular Nodular Heterotopia. It is a rare neuronal migration disorder which is also known as BPH, BPNH, PNH, PVH, subependymal heterotopia or grey (gray) matter heterotopia. It also includes a variant, PVNH with Ehlers Danlos syndrome otherwise known as PVNH4.
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.