2017 World PVNH 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 each Red Truck Lager and Red Truck IPA 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

Aug. 5 2017, Vancouver, BC, Canada 

Starting at dusk on Aug 5 until dawn on August 6, the Sails of Light at Canada Place will be lit pink and yellow in advance of World PVNH Disorder Awareness Day and in support of all PVNH-affected families in BC and around the world, as well as for those who have other types of neuronal heteropia disorders. Join us for this very first illumination at Canada Place and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #sailsoflight #PVNHDay2017 #pinkandyellow #PVNHawareness

Canada Place goes pink and yellow for World PVNH Day

Photo: Denis Couture

August 7, everywhere

Wear pink and/or yellow on August 7th in support of the 400+ PVNH-affected families from 31 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 #PVNHday2017 #PVNHsupport. And remember to have fun on that very special day. Feel free to also wish #Happy9thElla!!!

Aug. 7, Portsmouth, UK

For the 3rd time, Emirates’ Spinnaker Tower in Portsmouth, UK will glow pink in support of #PVNHfamilies on August 7 for World PVNH Disorder Awareness Day. Join us for very illumination at Spinnaker Tower and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #SpinnakerTower #PVNHDay2017 #PVNHawareness

Spinnaker Tower goes pink for World PVNH Day

Photo: Matt Whiteman

Aug. 7, Vancouver, BC, Canada

For the 4th year, Canada Place in Vancouver, BC, Canada will glow pink and yellow in support of #PVNHfamilies on August 7 for World PVNH Disorder Awareness Day. Join us for this illumination at Canada Place and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #CanadaPlace #PVNHDay2017 #PVNHawareness

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BC Place goes pink and yellow for World PVNH Day

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 Photos : BC Place & @mjduartejr

Aug. 7, Vancouver, BC, Canada

For the first time, Vancouver’s City Hall will glow pink in support of #PVNHfamilies on August 7 for World PVNH Disorder Awareness Day. Join us for this illumination at City Hall and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #CityofVancouver #PVNHDay2017 #PVNHawareness

Vancouver City Hall goes Pink for World PVNH Day

 Photo: City of Vancouver