2018 PVNH Awareness Day Events

Aug 1-31, The Regal Beagle, Vancouver, BC

Join us all August at The Regal Beagle in Vancouver, BC for the month long PVNH Research fundraiser. During August, $1 of Red Truck Lager sleeves will go to PVNH Support & Awareness’ research fund. Our goal is to positively impact affected individuals’ lives and ultimately, provide better treatment and care options for PVNH-affected babies, kids and adults around the world. 
UNITE. EDUCATE. ADVOCATE. FIND A CURE.

PVNH research fundraiser

LANDMARKS GLOW FOR WORLD PVNH AWARENESS DAY

Aug. 6, 2017

  1. BC PLACE, Vancouver, BC, Canada : The lights will come on at dusk and remain on until 11:00 PM.

BC Place glows pink and yellow

 

2. PEACE BRIDGE, Fort Erie (ON) / Buffalo (NY)  : The lights will come on at dusk and remain on until 1:00 AM.

Aug. 7,

  1. SWAN BELL TOWER (PERTH, AUSTRALIA)
  2. NIAGARA FALLS (ONTARIO, CANADA/NY, USA)
  3. CN TOWER (TORONTO, CANADA)
  4. SCIENCE WORLD (VANCOUVER, BC, CANADA)
  5. CALGARY TOWER (CALGARY, ALBERTA, CANADA)
  6. HIGH LEVEL BRIDGE (EDMONTON, ALBERTA, CANADA)
  7. SPINNAKER TOWER (PORTSMOUTH, U.K.)Spinnaker Tower goes pink for World PVNH Day
Photo: Matt Whiteman

8. VANCOUVER CITY HALL (BC, CANADA)

9. SAILS OF LIGHT AT CANADA PLACE (BC, CANADA)

 

 August 7, everywhere

Wear pink and/or yellow on August 7th in support of the 450+ PVNH-affected families from 32 countries around the world as well as those with other types of neuronal heterotopia disorders! 

Families, friends, PVNH specialists and researchers, allies in the rare disease and medical worlds will join us too. Will you be there?

Don’t forget to follow us and share your photos of PVNH Day on Facebook, Instagram and Twitter @PVNHday. You can also add them on the PVNH Support & Awareness public page on Facebook and on Twitter and Instagram @PVNHsupport. Use #PVNHloud #PVNHday  #PVNHsupport #PVNHday. And remember to have fun on that very special day. Feel free to also wish #Happy10thElla!!!