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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #3 March 2016 

Help us Paint Canada Purple for World PH Day!
Thursday, May 5th, 2016 marks the 5th annual World PH Day. This year again, PHA Canada will celebrate and spread awareness of PH by illuminating several Canadian Monuments in Purple. In 2015, thanks to the efforts of members of our community, 14 monuments were illuminated in periwinkle from shore to shore including landmarks such as: BC Place, Vancouver; Calgary Tower, Calgary; High Level Bridge, Edmonton; CN Tower, Toronto; Ottawa Heritage Building, Ottawa; and Olympic Tower, Montreal!
To ensure that Canada shines bright in periwinkle on May 5th, please help us by sending requests for monuments in your area to be illuminated. PH patient and advocate Loretta Chu has researched an impressive list of Canadian monuments that accept illumination requests. To access this list and to get tips on how to present a request, please visit phacanada.ca/PaintCanadaPurple. 
We look forward to seeing Canada shine bright on World PH Day!


PH Awareness Video Inaugural Screening

Our new PH Awareness was screening on Saturday, March 19th at Pacific Cinematheque (Vancouver). Over the past few months, we collaborated with the filmmaking cooperative Cineworks Independent Filmmakers Society and independent filmmaker Tyler Gamsby from Creek Water Media on the production of a series of PH Awareness videos. This was made possible through Cineworks’s Play It Forward program, which supports the development of campaign videos by pairing non-profit organizations with independent filmmakers in the Vancouver area. We will share our PH awareness videos with our community and the public for World PH Day and PH Awareness Month! Special thanks to the members who participated in this project: the James Family; Terry Anstey; the Rathonyi-Reusz Family; Natalie Roy and Justin Price; Dianne Gale; Robyn Ashmore; and Josie Pretty.

BCPHS Pulmonary Hypertension Symposium
The 14th Pulmonary Hypertension Symposium organized by the BC Pulmonary Hypertension Society was a great success! Held on February 26th and 27th, the symposium brought together members of the BC PH community, including patients, caregivers, doctors, medical professionals, and supporters. It was wonderful to see so many familiar faces, welcome new members into the Canadian PHamily, and listen to insightful presentations by long-term patients, as well as medical professionals from the Vancouver PH clinic, Vancouver Coastal Health, and Vancouver General Hospital.

PHA Canada’s head office is moving! Please note that, as of Friday April 1st, our mailing address will be:

Suite 917 - 750 West Broadway
Vancouver, BC
V5Z 1K1


Awareness-Raising Resources
World PH day is the perfect occasion to organize an awareness event in your community! We’ve got lots of resources and materials to help you plan an awareness-raising activity.
Here are a few ideas in preparation for May 5th:
Hold an information table at your local school, church, or community centre. It can be as easy as that! Order free educational materials from our online store.
Organize a 6-Minute Walk for Breath event. Our 6-Minute Walk for Breath campaign can be used for awareness and/or fundraising events related to pulmonary hypertension. Find out more about this campaign and order your free kit here.
Give a PH 101 Presentation. If you’re not afraid of speaking in public, we’ve got a ready-made Power Point presentation that will allow you to deliver accurate and easy-to-understand information on pulmonary hypertension. This is the perfect tool to go the extra mile and help people around you understand what living with PH means. Contact Mariane (mblaporte@phacanada.ca) for more information or to get a copy of the presentation.

Patient Evidence Survey: selexipag (Uptravi®)
PHA Canada, along with our partners at the Scleroderma Society of Canada (SSC), is currently preparing to make a joint patient evidence submission to CADTH regarding selexipag (Uptravi®). CADTH gathers input from patient groups to ensure that issues important to patients are incorporated into the Common Drug Review process—a national process that helps the country's provinces and territories decide if non-oncology drugs approved by Health Canada should be eligible for public reimbursement—in a formal and meaningful way.

PHA Canada and SSC have developed an online survey in order to gather important information from patients and caregivers concerning their personal experiences with current pulmonary arterial hypertension (PAH) treatments, as well as their experiences and/or expectations of this new PAH therapy. Please share your experience by taking in our online survey.

If you have participated in the selexipag (Uptravi®)trials please contact us directly for the purposes of being interviewed for the patient evidence submission. Including the experiences of patients with direct experience with selexipag (Uptravi®) is crucial to developing a comprehensive and representative patient evidence submission. You can reach us at info@phacanada.ca or call 1-877-774-2226.




PAH Patients Engaged in Exercise Training Show Range of Improvements, Review Study Reports—A systematic review of clinical trial data showed that exercise training improves exercise capacity and the quality of life in patients with PAH.
 Combo Therapy Slows PAH Progression—Combination therapy was significantly more effective than monotherapy for slowing disease progression in patients with pulmonary arterial hypertension, according to results of a meta-analysis.
Cycling for a good cause in Grand Falls-Windsor—February may not be the best time of year for cycling, but in Grand Falls-Windsor, a whole lot of people have been taking to their bikes for a very good cause.
Lennie Critch fundraising for double lung transplant—Critch was diagnosed with pulmonary artery hypertension (PAH) in 2010, at the age of 42.
Grand Falls-Windsor Woman Prepares for Double Lung Transplant—Grand Falls-Windsor's Wendy King was training for a triathlon four years ago. Now she is waiting for a double lung transplant.

Cheesy Sauce
Contributed by: Kate McGoey-Smith, DipNrsg, MSW,RSW, FM, Volunteer Instructor with Fork Smart (Adapted from a recipe by Susan Voisin of Fat Free Vegan Kitchen)

For many, a low-sodium diet is synonymous with reducing cheese consumption. This dairy-free cheesy sauce recipe is a delicious alternative and a great way to enjoy classics like mac-and-cheese, nacho dip, or veggie dressing!

Ingredients:
Cauliflower—6 heaping cups of cauliflower florets (2 small cauliflowers)
Dried:
- 3 tsp granulated onion powder
- 1 ½ tsp garlic powder
- 3/4 tsp smoked paprika
- 3/4 tsp dry mustard
- 3/8 tsp turmeric
In the blender:
- 3/4 cup nutritional yeast (heaping)
- 4 tbs cornstarch 
Wet:
- 6 cups of water in saucepan
- 1 ½ tbs of lemon juice
 
Directions:
1. In a saucepan, add 6 cups of water and bring to a boil.
2. Add to boiling water dried seasonings (onion powder, garlic powder, smoked paprika, dry mustard, and turmeric). Whisk together.
3. Add cauliflower florets. Bring to a boil and then reduce to medium-high heat until cauliflower is fork tender.
4. Carefully transfer the entire ingredients to high-speed blender and blend until smooth.
5. Add nutritional yeast, corn-starch, and lemon juice, and blend until smooth and creamy.
6. Return contents of blender to saucepan and heat until it begins to bubble, stirring occasionally. Allow it to cook and thicken. Serve hot.

Check out “The Fork Smart Podcast”— weekly editions on itunes or forksmart.org—a great place to hear helpful, evidence-based nutrition and ways to eat healthier!
The Pulse 

  
Community Events: click to read more!

Apr. 2: Toronto PH Support Group Meeting, North York, ON. Join the Toronto PH support group to share your experience with other patients, family members and caregivers.

Apr. 2: Acute and Chronic Pulmonary Embolism Symposium, Toronto, ON. A comprehensive overview of pulmonary emboli.

Apr. 27: Vancouver Island Support Group Lunch, Duncan BC. Join the Vancouver Island Support Group for a lunch at the Duncan Dog House Restaurant.

June 25: PHA Canada Run/Walk for Research, Ajax, ON. Participate in the Third annual PHA Canada Run/Walk for Research!

July 15: GolPH for PH, Brampton, ON. Join the GolPH for PH tournament, raising funds for PHA Canada.
 
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!
 

Community Photo of the Month


Toronto Chapter members Ruth, Joan, and Jeannie holding an awareness table at the University of Toronto's Faculty of Pharmacy.
 

Happy Spring!
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