World PVNH Day August 7, 2016

We are thrilled to announce that both BC Place in Vancouver, BC, Canada and Spinnaker Tower in Portsmouth, UK will be glowing again on August 7th, 2016!!! 

Remember to wear pink and / yellow clothing or accessories. You can also decorate your home, place of business, office with pink and yellow balloons, flowers, candies, lanterns. Be creative!  Share your photos @PVNHday on Facebook, Instagram and Twitter using  ‪#‎PVNHDay‬. You can also join our event on 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

Spinnaker Tower, PVNH Day 2015 by Simon Winson                                               Photo credit: BC Place

Photo credit : Simon Winson                                 Photo credit : BC Place

buttonpvnhawareness final ella

World PVNH Disorder Awareness Day button with Ella’s photo.

On August 7, please join us and spread the word about World PVNH Disorder Awareness DayTM Why August 7? That is the day Ella was born. Had Ella not been part of my life, PVNH Support  & Awareness  would never have seen the light, and families affected by PVNH and other neuronal heterotopia disorders would still be left to fend for themselves.  So, on August 7, and throughout the year, share our story and help families affected by PVNH. On August 7, 2016, my daughter Ella would have turned 8. Instead of celebrating her birthday with family, friends and birthday cake, on August 7, we honour her and the children & adults that are affected by the rare disorder called Periventricular Nodular Heterotopia (PVHN). Please wear pink or yellow (clothes or accessory) or decorate your house, office, place of business, cottage, etc.  to show your care, take a picture, post it and share it, tweet / Facebook or blog about it, and most of all – have fun on Ella’s birthday. With your help, we will change the world of families affected by PVNH. Please use #PVNHday, #PVNHAugust7 and/or #pinkandyellow for Facebook, Twitter  and Instragram when you tag @PVNHsupport and reference when blogging. An event has been created on Facebook so please share you pictures of #pinkandyellow

There will be a Vancouver, BC event for    on August 7 – starting at 6:30pm at the Regal Beagle followed by a photo op in front of Tap & Barrel Olympic Village at sundown and then drinks to Ella right after also at the Tap & Barrel.  If that was enough, all through August,  The Regal Beagle will donate $1 from each pint of Red Truck Lager and IPA to PVNH research!!!