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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol 5 #3 Mar 2014

"Out of Breath" video now on Youtube!
Last spring, PHA Canada worked alongside the Victoria School of the Arts in Edmonton to create a short film about PH. This movie, targeted at a youth audience, explains how PH affects a patient through an engaging storyline about a boy in high school. We highly recommend this film to anyone looking for an easier way to explain pulmonary hypertension. Check it out on our Youtube channel today!

CTEPH Awareness Campaign!

PHA Canada is excited to be launching a Chronic Thromboembolic PH (CTEPH) awareness campaign for World PH Day on May 5th, 2014. We are glad for this opportunity to focus on a lesser-known form of PH through a social media campaign that will include Facebook, Twitter, a dedicated CTEPH website and videos. PHA Canada would like to invite any CTEPH patients (past or present) to provide their feedback and/or help in the creation of videos. If you have been affected by CTEPH, contact Angie at aknott@phacanada.ca to become involved!
This innovative, CTEPH-focused campaign is possible through an unrestricted educational grant from Bayer.

 
Burden of Illness Survey: Update

In September and October 2013, 118 patients and 61 caregivers completed the Burden of Illness survey. You provided us with a never-before seen picture of what PH means on a day to day basis. These unique Canadian community insights will help patients, caregivers and friends to engage in advocacy and raise awareness about the reality of PH. We’re now working on some campaigns that will showcase the Canadian picture of PH in accessible ways: we can’t wait to update you on our next steps.


Inside PHA Canada – Inviting a Board Member from QC

PHA Canada is currently seeking an interested party located in the province of Québec to join our Board of Directors. A major goal of PHA Canada is to ensure that our Board adequately represents the needs of the Canadian PH community, and as such, would like to include the Québec voice. For more information on this position, please contact Angie at aknott@phacanada.ca.


Resource Tip of the Month: Local Contacts Map
We believe that no one understands what it’s like to live with PH better than someone else who’s been touched by this disease. We’ve collected the contact information of patients and caregivers across Canada who are prepared to act as a resource and support to others. To find someone in your local area who understands, check out our Local Contacts Map on the ‘By Phone’ section of our community page.


Low Sodium Recipe of the Month - No Fat Fries

This recipe is a recent favourite of Kate McGoey-Smith’s family. She hopes you can enjoy them as much!

Ingredients

  • Red Skinned Potatoes (sliced  length-wise at  finger width intervals)
  • No-salt vegetable broth
  • 1 cup nutritional yeast
  • 3 tbs onion powder, 3 tbs garlic powder

Method
Pre-heat oven at 400 F. Pre-soak fries in a bowl with no-salt vegetable broth for at least 15 minutes. Then, combine nutritional yeast, onion and garlic powder. Drain the fries and place them on a parchment-paper lined baking sheet. Sprinkle the seasoning on top of the fries. Bake fries on one side for 30 minutes and turn fries over. Sprinkle more seasoning and bake for another 20-30 minutes depending on desired crispiness.


PH News

Harper Government building pan-Canadian networks to strengthen health research February 24, 2014 – Ottawa, Ontario – Canadian Institutes of Health Research Federal Health Minister Rona Ambrose was joined … 

New hope: Researchers discover genetic mutations that cause rare and deadly lung disease SALT LAKE CITY – A team of researchers, led by physicians and scientists at Intermountain Healthcare's Intermountain Medical Cen…

Caripul now available under exceptional access program
CARIPUL® (room temperature stable epoprostenol) Is Now Available Under Exceptional Access Program for Patients with Ontario Drug…
 
For more PH news: www.phacanada.ca/news
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The Pulse

Share your story 
We love your stories and events! PHA Canada exists for our members: our goal is to share resources and connect our community. Submit your stories for Connections & the Pulse at: connections@phacanada.ca
Community Events: click to read more!
 
Mar 08 - London PH support group meeting. Westmount Branch of the London Public Library
1:30 PM - 3:30 PM

Mar 15 - RTSF Conference 2014
Fanshawe College, London, ON
8:00 AM - 4:00 PM
 
Mar 22 - 1st Northern Alberta Chapter PH support group meeting
Condo Party Room, 69 Crystal lane
2:00 PM - 4:00 PM
 
Mar 26 - Victoria/Langford PH lunch support group meeting
12:00 PM - 2:00 PM, Evedar’s.

Apr 12 - London PH support group meeting. Westmount Branch of the London Public Library
1:30 PM - 3:30 PM
 
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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