PHA Canada eNewsletter: Vol4 #4 April 2014

World PH Day – just one month away!
The 3rd annual World PH Day is approaching incredibly fast, and we cannot wait to witness the success of our members’ Lend A Hand campaigns. And that’s not all: we have two more awareness campaigns planned for this special day as well.
The CTEPH Awareness Campaign is an online campaign to bring awareness to CTEPH: a rare form of PH. This campaign will focus on Twitter and Facebook, and is targeted at the general public as well as individuals at risk for CTEPH. If you are a current or past CTEPH patient, we would love for your participation in this campaign: email Angie for more information.
The Burden of Illness Survey results are in, and we’re crafting them for a big media launch on World PH day. The key messages from the survey focus on the need for early diagnosis, and the impact of the disease on both patients and caregivers. If you are interested in sharing your own PH story, your voice could make the campaign much more powerful. Learn more here.
The Lend a Hand campaign is bigger than ever this year! The campaign involves collecting signatures on blue paper handprints to raise awareness of the disease. For the last two years, we collected around 2000 prints annually. This year, we have already distributed over 7000 handprints to community members! We are thrilled to hear about events being planned across the country, and cannot wait for the final tally of handprints. It isn’t too late to order your own Lend a Hand kit if you’d like to contribute to this campaign. Order your kit today!
This World PH Day promises to be PHA Canada’s largest ever. Make sure to “Like” our Facebook page to catch all of the updates and photos on May 5th!

Transplant games

Did you know that the Canadian Transplant games this year will be held in Moncton, New Brunswick? PHA Canada Board Member Jen Gendron is on the organizing committee for this event, and would like to invite our PH community to participate! "Registration is now open for the 2014 Canadian Transplant Games, July 7th-12th. We would love to welcome some of our lung transplant recipients to this great event! For more information,  visit the Games website."

A cookbook for PH patients
Isabel and Mary Anne from the Southern Alberta Chapter of PHA Canada are working to put together a low-sodium cookbook to benefit all PH patients. They are excited about this book’s potential as a fundraising tool! To complete this book, Isabel and Mary Anne need your favourite low-sodium recipes. If you have a recipe you know and love, please email it to us today so that the cookbook gets closer to being printed!

Call for annual report narratives
Do you remember when “Journeys” was a feature at PHA Canada’s Conferences? These personal narratives were intimate and inspiring. In 2014, we’d like to bring that sort of inspiration back through our Annual Report.

We’re going to feature the very unique stories of just a few members whose lives have been touched by PH, and who have benefited from the support of PHA Canada. Is this you?
If you feel that PHA Canada has had a big impact in your life since diagnosis, or if PHA Canada has supported someone you know, we want to hear your story. Please write to us at so that we can feature your story in our 2014 Annual Report.

The wallet-sized PH info cards have arrived!

This tiny, free resource is perfect for handing out to anyone who may not know PH: people in the grocery store, the parking lot, or your child’s school. We hope that all patients and caregivers can arm themselves with these cards so that they are never caught off-guard with questions about PH. Each package contains 50 cards. Order yours today!

Pepper Ridge Sandwiches by Ann Esselstyn 
Contributed by Kate McGoey-Smith
Some of you may have attended Kate’s session "Navigating the Salt Mines, a patient’s perspective" at our 3rd National PH Conference in Ottawa. Kate has adopted a low fat, plant-based diet and has seen some remarkable results in the improvement of her overall health. Kate writes: “A low fat, whole plant-based diet comprised of fruit, vegetables, grains and legumes helps to protect, restore and even grow endothelium. Only plant foods are low in fat and contain zero cholesterol, as well as provide a rich supply of L-arginine, an essential amino acid for nitric oxide production. (Reference: John McDougall, MD Internist). This is intended as information only and not endorsement or medical advice. Seeking more information? Check out Become “fork smart”!”

Ingredients and Steps 
Roasting Peppers:  3 red peppers – 400 F

  • Wash peppers (leave water droplets on peppers) and place on parchment paper lined cookie sheet; turn over after 15 mins and  cook for 15 mins more.
  • When browned, place in bowl immediately and cover with plastic wrap (skins will separate from the flesh).
  • Peel skins, remove stems and seeds (leave liquid in bowl).
  • Tear/ cut  skins into strips return to bowl. 
  • Add garlic (1-2 minced), oregano -1 tsp, thyme -1tsp, rosemary-1tsp, basil-1tsp and vinegar- 2 tbs and mix together.
Portobello Mushrooms: 4 mushrooms thinly sliced lengthwise
  • Place slices on parchment paper lined cookie sheet.
  • Thinly coat mushrooms with barbecue sauce
  • Cook for 20-30 mins in oven until cooked through 
Hummus: (makes 1 1/2-2 c)
  • Blend in food processor: chickpeas(15 oz. can drained and rinsed), garlic (2 cloves – crushed), lemon juice (1/2 medium lemon  juiced), and water  (or can use 1tbs tahini)
Additional ingredients:
  • avocado - 1 sliced
  • baby spinach - 6 oz
  • scallions - 1 bunch chopped
Construct the sandwich: (8-12 slices of low fat, multi-grain bread)
  1. Spread hummus on one side of bread (may toast)
  2. Sprinkle a thin layer of scallions over the hummus
  3. Place a layer of roasted red peppers, mushrooms, spinach and avocado
  4. Place another piece of bread atop the stack, slice sandwich into halves
  5. Complete remaining sandwiches

Bayer: First Patient Enrolled In Phase IIIb Pilot Study, RESPITE
Bayer HealthCare announced that the first patients have been enrolled in an open-label, multicentre, multinational Phase IIIb pilot study, RESPITE or Riociguat clinical Effects Studied in Patients with Insufficient Treatment response to PDE-5 inhibitors.
Adempas® now approved for second rare heart and lung disease
News Release Toronto, March 10, 2014 – Bayer Inc. announced today the approval of Adempas® (riociguat tablets) for treating patients with a form of heart and lung disease called pulmonary arterial hypertension (PAH).
Yale study provides a breath of hope for pulmonary hypertension patients
Most of us draw roughly 25,000 breaths a day without any thought. But for patients with PH, a life-threatening increase in blood pressure in the lungs, even the smallest task can leave them gasping for air.
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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!
Apr 06: Vancouver Support Group Meeting
The Laughing Bean Coffee Company, 4:30-6 PM

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

Apr 12: Toronto PH Support Group Meeting - April
Condo Party Room, 1:30-4 PM

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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