PHA Canada eNewsletter: Vol 5 #2 Feb 2014

BC symposium report
PHA Canada staff were excited to attend the BCPHS Symposium gathering this weekend. The presentations were extremely informative, ranging from lifestyle tips to drug trials and research. We enjoyed the focus on living well with PH, with discussions on sodium, diet issues and travelling: challenges faced by every patient. The highlight of the gathering was the panel discussion, which featured a variety of experts answering the questions of patients in a very candid way. This element created the feeling of a warm conversation instead of a presentation. The BCPHS Symposium was an intimate and personal gathering. We were thrilled to be a part of this engaging discussion on current issues in PH, and came away more informed and more inspired. We thank Roberta Massender (BCPHS President, PHA Canada Vice Chair) as well as the BCPHS Board and volunteers for all of their efforts in organizing the event.

News and Events
Lend a Hand for World PH Day – coming up!

It may seem like a ways away, but May is just around the corner. On May 5th 2014, we'll be celebrating the 3rd World PH Day. In order to help grow awareness of PH on this very special day, we want to continue our Lend a Hand for World PH Day campaign, but make it even larger than in previous years. We’ve set an extremely ambitious goal for the Lend a Hand campaign for 2014: to collect 3000 signed hands, because 3000 represents the estimated number of PH patients in Canada. Hands represent hope and solidarity with each and every patient, so we would like to collect 1 hand for each patient in Canada. It’s easy to show your support – just order a lend a hand kit from PHA Canada, and collect signatures from your community. Please help us reach our goal of 3000 signed handprints by starting to think about what you will do and requesting your Lend a Hand kit today.

The Vancouver Support Group is underway!

The Vancouver/Fraser Valley PH support group meets on the first Sunday of every month at 4:30 at the Laughing Bean Coffee Company in Vancouver - 2695 East Hastings Street. The next meeting will be March 2nd, 2014. Look for Tarya in the purple shirt! Learn more at the group’s facebook page, or email Tarya at

Inside PHA Canada – Welcome Founding Board Members

With the new PHA Canada governing regulations, PHA Canada’s board spots have expanded to 15. A new category of member – Founding member, used to recognize and honour those within the Community who were instrumental to starting PHA Canada, has been created. One of the privileges of this class of members is that if open spots remain on the Board they may vote to fill those spots in order to ensure founding member representation. On January 25, founding members Darren Bell, Jennifer Gendron and Sharon Proudfoot, were voted back onto the Board. We would like to welcome Darren, Jennifer and Sharon back onto the PHA Canada Board, and are honoured to have their extensive expertise to support our efforts going forward.

Resource Tip of the Month: Our Youtube Channel!
Did you know that PHA Canada has a YouTube channel? We post PHA Canada created videos, such as our Conference video, in addition to other videos about life with a rare disease. We also share PH videos from our friends at PH Associations across the world. Please subscribe to our channel to catch the latest in PH related videos!

Low Sodium Recipe of the Month - Potato Corn Fritters
This is a new recipe that Kate McGoey-Smith created for her family to enjoy as part of a meal or snack! Please note that “nutritional yeast” can be purchased at local health food stores. This gives foods a savory, cheesy taste without the dairy, added fat or salt! It is often put on air-popped popcorn as a healthy alternative to cheese.

-8 large yellow potatoes – peeled, diced
-Nutritional Yeast – 1 cup
-Onion Powder – 2 tSp
-Garlic Powder – 2 tSp
-Green Onions -  6- washed, thinly sliced
-Kernel Corn – 341 ml can, drained

Boil potatoes in pot until soft when pricked with fork (20-30 mins medium heat). Drain  cooked potatoes and  blend with electric blender in pot until potatoes are smooth and creamy in texture. Add remaining ingredients to potatoes and mix thoroughly with spatula. Scoop portion of mixture using a soup size spoon and place on parchment paper lined baking sheet ( space apart as they will spread out a bit). Bake at 400 degrees F. for ~20-30 mins until golden brown and then flip over and bake additional ~10 mins until golden brown. Serve hot with mustard, unsweetened apple sauce or plain as part of a meal or snack!

PH News
Another piece of the PH puzzle gets plugged into place
Jan 22: Pulmonary hypertension, a dangerous increase in the pressure of blood vessels in the lung, is one nasty disease.
Women In Government Launches a Pulmonary Hypertension Legislative Toolkit
Jan 3: Women In Government (WIG) today announced the launch of its Pulmonary Hypertension Legislative Toolkit.
New mitochondrial research offers hope to those suffering serious disease
Dec 6: Queen's University professor Stephen Archer's (Department of Medicine) research has revealed that in serious human diseases (such as pulmonary hypertension) mitochondria displays an abnormal structure.
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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:
Community Events: click to read more!
Feb 9 - Mitzvah Day - Building community, one good deed at a timeJewish Community Centre, All Day
Feb 15 - Ottawa Chapter Support Group Seminar. Unitarian House of Ottawa, 2-4PM. 
Mar 02 - Vancouver Support Group Meeting. The Laughing Bean Coffee Company, 4:30-6PM

Apr 26 - Calgary's 2014 Transplant Trot. South Fish Creek Rec Centre / Shawnessy YMCA, All Day
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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