On August 7, we’ll celebrate the 12th edition of World PVNH Disorder Awareness Day.
We are working hard to secure illuminations and proclamations to ‘Paint it Pink & Yellow’ in support of infants, kids and adults affected by Periventricular Nodular Heterotopia (PVNH) as well as those impacted by other forms of Grey Matter Heterotopia (GMH), such as Subcortical Band Heterotopia (SBH). Below is a list of this year’s participating Illuminations, Proclamations and Support Partners.
We invite adults affected by PVNH, GHM or SBH as well as parents of children impacted by it and their family to wear pink and ywllow on August 7th, as well as share their stories in social media.
Tag @PVNHsupport and @PVNHday on Instagram , Threads, and Twitter, and PVNH Support & Awareness on Facebook and LinkedIn, with #PVNH, #GMH or #SBH, #PVNHawareness (or SBH or GMH), #WorldPVNHday and #PVNHloud.
If you wish to submit a story for our website or our social media, please contact info at PVNH support dot come.
July 14
CANADA
Tourism Cup Invitational, Vancouver, British Columbia. In memory of Ella Dupont Bedassie, two teams of hockey players battle it out for the Tourism Cup and fundraise for PVNH Research. Huge thanks to the players, and to our support partners : Reach Studios, The Regal Beagle Pub & Grill, AJ’s Brooklyn Pizza Joint , Rewind Beer & Co. and Parkside Brewery. We could not do what we do without your generosity! Thanks to you $2,126 were raised for PVNH Research at this annual event.
August 6
AUSTRALIA
- The Bell Tower, Perth, Western Australia (pink)
- The Big Banana, Coffs Harbour, NSW (pink)
CANADA
- Peace Bridge, Fort Erie, Ontario (pink and yellow). The lights will come on at dusk and remain on until 1:00 AM on August 7. Please note construction might obstruct the view.
UNITED STATES
- Zakim Bridge, Boston, Massachussetts (pink and yellow)
- Longfellow Bridge, Boston/Cambridge, Massachussetts (pink and yellow)
- Fore River Bridge, Quincy/Weymouth, Massachussetts (pink and yellow)
- Burns Bridge, Worcester/Shrewsbury, Massachussetts (pink and yellow)
- Peace Bridge, Buffalo, New York (pink and yellow). The lights will come on at dusk and remain on until 1:00 AM on August 7. Please note construction might obstruct the view.
- I-35W St. Anthony Falls Bridge, Minneapolis, Minnesota (pink & yellow) **Lit from 1/2 hour before Sunset to 1/2 hour after Sunrise.**
AUGUST 7
AUSTRALIA
- Optus Stadium , Perth, Western Australia (pink and yellow)
- Sound Tube, Melbourne, Victoria (pink)
- Bolte Bridge, Melbourne, Victoria (pink)
- John Cain Arena, Melbourne, Victoria (pink and yellow)
CANADA
- Proclamation from City of Halifax, Nova Scotia
- Halifax City Hall, Halifax, Nova Scotia (pink and yellow)
- Downing Street, Moncton, New Brunswick (pink and yellow)
- Downtown Place, Moncton, New Brunswick (pink and yellow)
- Avenir Centre, Moncton, New Brunswick (pink and yellow)
- Ottawa Sign at By Ward Market, Ottawa, Ontario (pink and yellow)
- The CN Tower, Toronto, ON (pink and yellow) **Lighting begins at sunset, however it won’t become fully visible until the sky darkens sufficiently approximately 30 minutes later. As it does most evenings, a standard light show will run for 8 minutes at the top of every hour, followed by another light show on the half hour. The night lighting will be visible by webcam on CN Tower webcam:
https://www.cntower.ca/#earthcam - Niagara Falls, Niagara, Ontario. The Falls will be illuminated pink, yellow, pink and yellow at 10:00 p.m. EST for a fifteen (15) minute duration, courtesy of The Niagara Falls Illumination Board. Please note that all Illumination times are approximate and subject to change according to light conditions. Live cam link https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str) Also, please note follow the public health guidelines if you choose to go to the park.
- Social media support from the Municipality of Lakeshore, Ontario
- IG Field Stadium, home of the Winnipeg Blue Bombers, Winnipeg, Manitoba (pink)
- Lethbridge City Hall, Alberta (pink)
- Proclamation from the City of Edmonton, Alberta
- Port Moody City Hall, Port Moody, British Columbia (pink and yellow)
- PVNH Support & Awareness Headquarters, Vancouver, British Columbia (pink and yellow)
- BC Place, Vancouver, British Columbia (pink and yellow)
- Bloedel Conservatory, Vancouver, British Columbia (pink and yellow)
- Burrard Bridge, Vancouver, British Colombia (pink)
- Vancouver City Hall, Vancouver, British Columbia (pink)
- Vancouver Lookout, Vancouver, British Columbia (pink)
- Proclamation from the City of Vancouver, British Columbia
UNITED KINGDOM
- Green’s Windmill & Science Centre, Nottingham, England (pink and yellow)
UNITED STATES
- Niagara Falls, New York. The Falls will be illuminated pink, yellow, pink and yellow at 10:00 p.m. EST for a fifteen (15) minute duration, courtesy of The Niagara Falls Illumination Board. Please note that all Illumination times are approximate and subject to change according to light conditions. Live cam link https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str) Also, please note follow the public health guidelines if you choose to go to the park.
AUGUST 8
CANADA
- Esplanade Riel Bridge, Winnipeg, Manitoba (pink) *Tag @cityofwinnipeg in photos*
- Winnipeg sign, Winnipeg, Manitoba (pink) *Tag @cityofwinnipeg in photos*
- Science World (TENTATIVE), Vancouver, British Colombia (pink and yellow)
AUGUST 27
UNITED STATES
- Skydance Bridge, Oklahoma City, Oklahoma
