2015 – 4th edition

World PVNH Day August 7th, 2015!!

You wore pink and / yellow clothing or accessories and shared your photos @PVNHsupport on Instagram and Twitter using  ‪#‎PVNHDay‬. You also joined 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 TM 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, 2015, my daughter Ella would have turned76. 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) 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 www.PVNHsupport.com when blogging.

An event has been created on Facebook so please share you pictures of #pinkandyellow https://www.facebook.com/PVNHday

Local Vancouver, BC event for    on August 7 will take place at the Regal Beagle in Kits from 6:30pm – 9pm. Also, all through August,  The Regal Beagle will donate $1 from each pint of Red Truck Lager to PVNH research.