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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol4 #5 May 2014
Special World PH Day edition!

This early edition of the Pulse e-newsletter focuses on the 3rd Annual World PH Day on May 5th and the exciting events that our organization and community has planned!

CN Tower lights up for World PH Day!
On May 5, Toronto’s CN Tower will light up in purple and white for World Pulmonary Hypertension Awareness Day! A standard light show will run for 8 minutes at the top of every hour. As if this weren't enough, Toronto deputy Mayor Norm Kelly has mandated that City Hall will be lit in purple and white as well. This astounding visual display for PH awareness was achieved only through the incredible lobbying efforts of Loretta Chu at the Toronto Chapter. If you're in the area on May 5th, please snap a photo of the CN Tower and send to loretta@phatoronto.ca!


The Lend a Hand campaign

Our largest initiative for the 3rd Annual World PH Day is the Lend a Hand campaign. In this campaign, PHA Canada provides printed paper handprints and campaign materials to community members, who collect signatures on the handprints and then mail them back. Our goal was to collect 3000 signatures this year, but our community has ordered over 11,000 handprints! We are blown away by the dedication of our community this year, and are SO excited to have the final handprint count. Please send photos & stories of your Lend a Hand events to bmcbride@phacanada.ca to share with our community on Facebook! Reminder: the deadline for sending back handprints back to PHA Canada is May 31st!


The Burden of Illness survey Media Launch
Because our survey was the first large-scale formal review of the Canadian PH population, we want the results of the Burden of Illness survey to make a big media impact. We’ll be publishing the survey results through press releases, traditional media and online on World PH Day!  Keep an eye out for our patient spokespeople in the media during the week of May 5th. We will be posting updates on our Facebook page as we learn of media activity!
 
The CTEPH Awareness social media campaign
To increase awareness of CTEPH, a unique type of PH, we’re launching a targeted social media campaign. The campaign will focus on Twitter and Facebook, and will aim to reach the general public and individuals who are at risk for CTEPH. Our CTEPH campaign also features fantastic personal story videos from some of our community members who have experienced the challenges of CTEPH! The website for the CTEPH campaign will be launched on May 5th: check PHA Canada’s website and Facebook for the web link.


Lend a Virtual hand online!
If you weren’t able to sign paper handprints for the Lend a Hand campaign, you can Lend a VIRTUAL hand through our website! Visit our website on May 5th to post your message of hope for all people affected by PH. Click here to post your message: we can't wait to read them!


Chocolate orange bundt cake by Kate McGoey-Smith

Afraid of giving up birthday cake? Not with this easy low fat cake – you will have the energy to blow out the candles! Check out wholicious.net to get “fork smart”.
 Ingredients and steps:
Dry Ingredients:  combine and whisk all together in one bowl.

  1. Flour – (Blended) – 1 ½ C
  2. Sugar – (or substitute) – 1 C
  3. Baking Soda – 1 tSp
Wet Ingredients: combine in a 2 C. measuring cup.
  1. 4 large navel oranges: zest one orange, and then squeeze the juice of all 4.
  2. Apple Sauce – 1/3 C. (or 1 unsweetened apple sauce snack cup) (replaces oil)
  3. White Vinegar – 1 tBp
  4. Vanilla Extract – 1 tSp

Whisk together and then add the wet ingredients into the dry ingredients bowl. Add: ½ cup of dairy-free chocolate chips. Whisk again until chips evenly distributed. Pour into non-stick bundt cake pan. Bake at 350 F for ~30-35 minutes until golden brown.
Editor's note: baking soda contains sodium, and packaged apple sauce may have added sodium. Please check labels to ensure you are buying applesauce that contains apples only. This recipe is only a low sodium recipe if a serving size is 1 slice of cake and the cake is divided into at least 8 slices.

Québec First Province to List Adempas® for the Treatment of CTEPH
MONTREAL, April 24, 2014 /CNW/ - Bayer Inc. announced today the Québec public formulary, Régie de l'assurance maladie du Québec, will list Adempas to treat CTEPH.
Northwestern Medicine study provides new insights on tissue scarring in scleroderma
A discovery by Northwestern Medicine scientists could lead to potential new treatments for breaking the cycle of tissue scarring in scleroderma patients.
A New Era of Therapeutic Strategies for Chronic Thromboembolic Pulmonary Hypertension by Two Different Interventional Therapies; Pulmonary Endarterectomy and Percutaneous Transluminal Pulmonary Angioplasty
Abstract Background Pulmonary endarterectomy (PEA) is established for the treatment of chronic thromboembolic pulmonary hypertension.
 
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!
 
May 3rd: 1st Annual Stamp Camp for PH
Social Room, 69 Crystal lane,12- 4PM. The Northern Alberta Chapter of  PHA Canada is pleased to present the 1st Annual Stamp Camp for PH! 

May 4th: Cornwall Stride for Breath
R.C.A.F, 11AM. 5km walk or run for pulmonary hypertension.

May 14th: 23rd Biennial International Congress on Thrombosis
Valencia, Spain
The "23rd Biennial International Congress on Thrombosis” will be held in Valencia (Spain) on 14th & 17th May 2014.
 
May 17th: Edmonton Transplant Trot
Sir Wilfred Laurier Park,9:30AM - 1PM. Transplant Trot Edmonton! Sir Wilfred Laurier Park May 17th 2014

June 5th: Pulmonary Hypertension and Vascular Disease Course - Switzerland
Lausanne. This year’s ERS school course on Pulmonary Hypertension and Pulmonary Vascular Disease is from 5-7 June 2014 in Lausanne, Switzerland.

June 14th: An introduction to advocacy and media relations
Novotel North York, 12- 3PM. We’re excited to announce we’re hosting a special support group meeting on Saturday, June 14 from 12-3pm.
 
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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