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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.5 #5 May 2015

Conference Wrap-up
PHA Canada’s 4th National PH Conference last weekend was an incredible success. We were thrilled to welcome over 235 patients, caregivers, family members and friends and over 50 speakers for a hopeful and educational weekend. Bringing together people with common experiences creates a Conference atmosphere that is truly indescribable. The connection, togetherness, excitement and hope that overflowed at our Conference has to be seen to be believed. Please visit our Facebook page for candid photos of the weekend!
We thank everyone who joined us for contributing to our fantastic weekend.  In addition, we wish to thank our event sponsors who made this Conference possible.
Platinum Sponsors:
Actelion Pharmaceuticals Canada
Silver Sponsors:
Unither Biotech
Bayer
General Sponsors:
GlaxoSmithKline
The BC Pulmonary Hypertension Society
Pfizer
Shoppers’ Speciality Health
McKesson Canada 






World PH Day and the Paint Canada Purple Campaign! 
Tomorrow is May 5th. PH patients and communities across the entire globe will be raising awareness of pulmonary hypertension through unique campaigns to celebrate World PH Day. PHA Canada is honoured to join dozens of PH associations across multiple continents in raising awareness on this special day. The Paint Canada Purple Campaign aims to illuminate monuments across the country in periwinkle purple. Below is a list of monuments that will be illuminated:

BC Place, Vancouver, BC
Science World, Vancouver, BC
Calgary Tower, Calgary AB
Langevin Bridge, Calgary, AB
Okotoks Town Hall, Okotoks, AB
High Level Bridge, Edmonton, AB
CN Tower, Toronto, ON
Toronto City Hall, Toronto, ON
Ottawa Heritage Building, Ottawa, ON
Olympic Tower, Montréal, QC
Various intersections, Victoriaville, QC
Hôtel de ville de Plessiville, Plessisville, QC
Manoir du Lac William, St-Ferdinand, QC

This list represents confirmed monuments, and others may still be lit in periwinkle! 

What YOU can do for World PH Day:
  • Take photos of your campaigns and activities on May 5th and send them to us at bmcbride@phacanada.ca so that we can share them with the rest of our community on our Facebook page!
  • Wear Periwinkle Purple 
  • Visit the illuminated monuments and tell others that May 5th is World PH Day
  • Put a purple light or banner (or purple Christmas lights if you have them) up at your house
We look forward to this fantastic public outreach opportunity and can’t wait to see our community wearing purple and raising awareness of PH. We will be reaching out to the media across Canada to gain as much World PH Day coverage as possible: if you’re interested in helping with these media efforts, please email Angie at aknott@phacanada.ca.


Imagine Canada Standards Accreditation
PHA Canada is delighted to announce that we have been accredited as part of the Imagine Canada Standards Program. This is a big step for PHA Canada who has now joined the ranks of Canada’s most trusted charities and non-profits! We have been working on obtaining this accreditation for over a year, and are now excited to make it official by sharing the news with you. To receive this accreditation, organizations must demonstrate excellence in the areas of:
  • Board Governance
  • Financial Accountability and Transparency
  • Fundraising
  • Staff Management
  • Volunteer Involvement
Thanks to this accreditation, we will be able to project a strengthened image of PHA Canada, which has been recognized as a leader in the sector. This will prove invaluable as we venture onto new fundraising terrain. We’ll be displaying Imagine Canada’s trustmark as part of our communications material:


PHocus on early diagnosis
Late diagnosis of PH is a significant contributor to the reduced quality of life and lifespan that some PH patients face. By encouraging earlier diagnosis of the disease, we hope that all PH patients can access individualized treatment faster so that their disease does not progress. We need YOUR help to teach family doctors about PH. Our “Sometimes it’s PH” brochure is a fantastic resource aimed at teaching medical professionals about PH. You can help by ordering some of these brochures and then giving one to your family doctor. To order or learn more, email sometimesitsph@phacanada.ca.

High-Altitude Pulmonary Hypertension in Cattle May Unlock New Insights into Human PHIn a new study entitled “Increased prevalence of EPAS1 variant in cattle with high-altitude pulmonary hypertension,” researchers discovered two genetic variants responsible for Brisket disease in cattle, which may provide clues to human conditions associated with pulmonary hypertension.

Early Decline in 6-minute Walk Test Distance Predicts Pulmonary Arterial Hypertension DeteriorationResults from a recent study published in the journal Respirology showed that an early decline in 6-minute walk test (6MWT) distance predicts deterioration of disease condition in patients with pulmonary arterial hypertension (PAH).

Newly Discovered Molecular Mechanism May Be Cause of Pulmonary HypertensionResearchers from Brigham and Women’s Hospital recently released findings from a study in which they have potentially uncovered the physiological mechanism leading to the development of Pulmonary Hypertension (PH).

Selexipag Reduces Risk of Morbidity/Mortality Episodes in PAHDuring the American College of Cardiology (ACC) Congress held this March (14-16) in San Diego, data from the pivotal Selexipag (Uptravi®) Phase III GRIPHON study was shared. This data shows that Selexipag significantly reduced the risk of a morbidity/mortality episode in PAH patients when compared with placebo (control) group.

Curried Sweet Potato Mushroom Burger
Enjoy this fabulous burger from Kate McGoey-Smith of www.forksmart.org!

Ingredients and steps:
-1 large white onion thinly sliced
-Juice of 1 lemon
-5.5oz tin of no-sodium tomato paste
-1/4 cup no-sodium veggie stock
-4 cloves garlic
-24oz sliced mushrooms
-3 tbs curry powder (optional)
-3 large cooked sweet potatoes
-3 cups flake rolled oats
                                          -2 cups cooked brown rice

Place onion in pot on medium heat with small amount of water until soft and translucent. Then add lemon, tomato paste, veggie stock, garlic and mushrooms and let simmer for 40 mins. Add curry powder if desired. In a separate bowl, mash the insides of the sweet potatoes with rolled oats and brown rice.  Mix well together and then add stove top ingredients. Mix well and transfer ½ to 2/3 to food processor and blend briefly. Transfer back to bowl, mix again and then use an ice cream scoop and placed scooped mixture on parchment lined baking sheet. Wet hand under water tap and then flatten each scoop into burger shape. Bake in oven at 400F for 25 mins and turn over for another 15 – 20 mins. (If can’t flip over after first 25 mins – leave another 5 mins and then flip and bake for remaining time). Makes ~ 25-30 burgers. These burgers also freeze well!

The Pulse 

  
Community Events: click to read more!

May 10: Transplant Trot Calgary!
Confederation Park 55+ Activity Centre, 10:00 AM - 2:00 PM
Help us to celebrate life after transplant for organ and tissue recipients and increase organ and tissue donation awareness in Alberta and across Canada! 


May 16: Transplant Trot Edmonton
Sir Wilfred Laurier Park, 9:30 AM - 12:30 PM
Join us for the Edmonton Transplant Trot!


May 30: Grey Bruce Transplant Trot
Kelso Park, Owen Sound, ON
Another Transplant Trot to join!


Hosting a PH event that you’d like us to publicize? Submit your event for our events calendar and we'll include it in The Pulse!
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