2019 World PVNH Disorder Awareness Day Events

LANDMARKS GLOW FOR WORLD PVNH AWARENESS DAY FROM AUGUST 5-11, 2019, PVNH FUNDRAISER, AND FAMILIES & FRIENDS PAINT  THEIR WORLD #PINKANDYELLOW

August 5

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

August 6

CALGARY TOWER (Calgary, Alberta, Canada)

PEACE BRIDGE (Fort Erie, Ontario, Canada / Buffalo, New York, USA)

NIAGARA FALLS (Niagara, Ontario, Canada). The Falls will be lit pink and yellow for 15 minutes at 10pm ET, for a 15 min. duration. This is made possible by the Niagara Falls Illumination Board. There are multiple hotels in the area that have live cameras. And EarthCam brodcasts live too https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str

August 7

ASPIRE TOWER (Doha, Qatar)

SYDNEY TOWN HALL (Sydney, Australia)

OPTUS STADIUM (Perth, Australia)

TRAFALGAR BRIDGE (Perth, Australia)

TELSTRA TOWER (Canberra, Australia)

SWAN BELL TOWER (Perth, Australia)

CN TOWER (Toronto, Ontario, Canada) Do note that the lighting begins at sunset, however it takes about 30 minutes for the sky to darken sufficiently for the lights to be in full effect. As it does most evening, there will be an 8-minutes light show at the top of every hour.

SCIENCE WORLD (Vancouver, BC, Canada) 

VANCOUVER CITY HALL (Vancouver, BC, Canada)

August 8th

SPINNAKER TOWER (Portsmouth, UK)

CANADA PLACE (Vancouver, BC, Canada

August 11th

QUEEN ELIZABETH QUAY BRIDGE (PERTH, Australia)

In addition to illumination of landmarks, we are extremely excited to announce that for the third year in a row,  Vancouver’s Mayor has declared August 7th World Disorder Awareness Day in the city. And the Province of British Colombia has declared August 7th World Disorder Awareness Day as well!!!

August 1-31st

The Regal Beagle will once again host a month long PVNH fundraiser! You better stop by for a pint of Red Truck Lager: 1$ goes straight to PVNH research!!!

EVERYWHERE

Wear pink and/or yellow on August 7th in support of the 500+ PVNH-affected families from 33 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  #PVNHday #PVNHloud #PVNHsupport            And remember to have fun on that very special day. Feel free to also wish #Happy11thElla!!!