World PVNH Day August 7th!!
Wear pink and / yellow clothing or accessories and share your photos @PVNHsupport on Instagram and Twitter using #PVNHDay. You can also join World PVNH Disorder Day on Facebook. Huge thanks to the UK’s Emirates Spinnaker Tower for lighting pink on our very big day and to Vancouver’s BC Place in Canada for lighting pink and yellow!
Spinnaker Tower BC Place
Photo credit : Simon Winson Photo credit : BC Place
Our next World PVNH Conference will be held in Vancouver, BC, Canada in October 2016. Will you be there?
PVNH stands for Periventricular Nodular Heterotopia. Sometimes referred to as PNH is medical journals, 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.