PHA Canada’s Monthly Electronic Newsletter
Vol 3. No. 1 January 2013

Happy New Year PH Community! We would like to take a moment to thank each of you for your support over the past four years and for your amazing volunteer efforts during 2012. We now look forward to sharing our 2013 journey with each of you.

Many of us make resolutions at the start of each new year. As we head into our fifth year of operation, we want to express our gratitude. Working with dedicated volunteers and staff makes building our community an inspiring project. We are grateful for the opportunity to serve the PH Community and we will be keeping up the momentum you have sparked in 2012.

This year, we are working to improve some of our internal governance processes and creating by-laws to support our transition to the new Canada Not-for-profit Corporations Act.

We are continuing to build our robust communications campaigns and strengthen our social media presence because we understand how important it is to connect with Canadians, share information about PH and create awareness about this rare disease. We want you to help us build our social media presence by engaging with us on Facebook, following our Tweets (@phacanada), checking out our YouTube channel and sharing your stories with us via e-mail or blogs.

We are currently building a Leadership Corner to support the work of our Board Members. The Leadership Corner is an internal tool that will provide Board Members with the resources they need to continue to enhance their governance and leadership skills.

We are also enhancing our fundraising efforts by building on the success of our Personal Pages efforts, by seeking new volunteers to host Pennies for PH programs, by developing innovative ways to seek support in a growing competitive market, and we will be launching 6-Minute Walks for Breath across Canada again this year.

We will also be hosting our hosting our third National Biennial Conference “Keeping the PHlame Alive” in Ottawa, Ontario (September 20 - 22, 2013). We would love to see you at the conference. Contact us at for more information and watch for updates on our website in the coming months.

We are looking forward to the coming year and we will be keeping up the momentum in this, our New Year.


In late November, PH patient and Toronto resident, Carolyn Mathur had the opportunity to attend the “Patient Experts in Health Technology Conference”.  The conference ran from November 25-27th at the Prince Hotel in downtown Toronto.

Carolyn attended sessions on Sunday morning before leaving to attend PHA Canada's Walk for Breath in the afternoon.  Sessions included: an opening breakfast with a presentation led by Durhane Wong-Reiger from CORD (Canadian Organization for Rare Diseases) followed by sessions entitled “Empowering Patients with Knowledge and Tools: Not-so-Basic Introduction to Prescription Drugs in Canada” and "Assessing Safety, Effectiveness and Budget Impact and Assessing the Value of New Therapies". 

While she was not able to attend the sessions on Monday due to a medical appointment, Carolyn returned on Tuesday and attended additional sessions including: “Patient Values and the Value of Patients” with a panel of four speakers and  a second session which covered the importance of understanding the value of the patient voice. The day ended with a small group exercise which focused on identifying patient concerns and creating principles and polices. 

You will be able to read more about Carolyn's experience in the next issue of Connections.  Having a presence at patient advocacy sessions and events that focus on rare diseases is a tremendous value for our organization.  We want to extend our sincere thanks to Carolyn for attending this session.  If you are a patient interested in becoming involved with advocacy, please contact us at


We are very pleased to report that "Pennies for PH" continue to be collected in many areas and they are really adding up!  Our most recent penny contribution was collected by Quinlan O'Blenis from Moncton, New Brunswick. Quinlan's cousin works for Petit Cavalier, a fine dining restaurant that agreed to put up a penny jar for collection. Between customers and staff donations, they raised $60 and then held a family penny rolling session to complete their work.

Quinlan's grandmother found an appropriate poem that she wished to share:

I found a penny today
Just laying on the ground
But it's not just a penny
This little coin I found.
Angels put it there
That's what my grandma told me
She said angels tossed them down
Oh, how I love that story.
She said that when an angel misses you
They toss a penny down
Sometimes just to cheer you up
To make a smile out of your frown.
So don't pass by that penny
When you're feeling blue
It may be a penny from heaven
That angels tossed down to you.
Author unknown

RESOURCE TIP OF THE MONTH: Using PHA Canada's Online Events Calendar
Written by: Jennifer Gendron

Are you holding an event or a support group meeting that you would like to share with others?  We are happy to receive information on your events and activities to post on our online events calendar.  This is a great way to promote your event with others throughout the PH community. 

To submit information on your upcoming event, simply log on to our website at and visit our "News & Events" tab.  Once there, click on "submit here" where you will be led to an easy to complete template that will allow you to enter all of the details on your event including, time, date, location and contact information for the organizer. 

Your event will then be uploaded to our events calendar so that others will know what is happening in the PH community.  We regularly update this calendar with events being hosted by PHA Canada as well as those received from chapters, support groups and provincial organizations and any individuals organizing PH-related events. 

We invite you to take the time to visit our events page to learn what is taking place throughout our PH community in the coming months.



The BC Pulmonary Hypertension Society (BCPHS) in conjunction with PHA Canada will host the Western Regional Symposium for Pulmonary Hypertension from February 22nd to 24th at the Terminal City Club at 837 West Hastings Street in Vancouver.

The theme of this year's Symposium is "PHighting Back: Supporting Mind, Body and Soul". Members of the PH community living in Western Canada are invited to register for the event. Registration is now open, click here to learn more about the Symposium and to register.

Learn how to support mind, body and soul at this 2.5-day symposium. An opportunity to meet and connect with other patients, caregivers and families while learning about the latest in the field of PH. Building upon the success of the BC PH Society's (BCPHS) Symposium held for the past 10 years, this year BCPHS has partnered with PHA Canada to offer a larger event that is open to all residents of Western Canada.

The Symposium will begin on Friday night with a meet and greet and will feature a full day of sessions on Saturday, including a keynote dinner, and will end with breakfast on Sunday.  The Symposium, will feature a full day of sessions, targeted at supporting attendees minds: educating them about their disease and giving them an insight into the latest research; their soul: focusing on psychosocial/emotional support and the psychological aspects of living with a chronic illness; and body: a session on how the practice of yoga can help patients become more physically active despite the limitations of their disease.

During the Symposium, BCPHS will also hold its AGM.The PHA Canada Board of Directors will also be meeting at the event.

To learn more about the event or to register follow this link. If you have any questions about the event, please contact Angie Knott at


What does the Canada Not-for-Profit Corporation Act mean for PHA Canada? 
Written by: Corinne Crichlow

Under the Canada Not-for-Profit Corporation Act, PHA Canada is considered a not-for-profit corporation. This designation recognizes that an organization has a membership and is governed by a board of directors. The Canada Not-for-Profit Corporation Act (NFP Act) came into force on October 17, 2011. This new Act governs not-for-profit corporations. PHA Canada will adhere to Part II of the Canada Corporations Act until it transitions to the NFP Act.

Transition to the NFP Act
Under the NFP Act, the Board of Directors maintains responsibility for ensuring proper and transparent stewardship of the organization. This includes managing financial reporting, ensuring annual audits of financial statements and developing and implementing relevant organizational by-laws. PHA Canada’s Board of Directors will be responsible for ensuring that PHA Canada transitions to the NFP Act by October 17, 2014.

PHA Canada will maintain its registered charity status under the Canada Revenue Agency and will adopt its new status of not-for-profit corporation under the NFP Act upon completing transition.

The NFP Act introduces new rules that will require the review of existing organizational articles and by-laws, and the preparation, approval and filing of new by-laws. In general, a not-for-profit corporation will have by-laws that include the following items:

  • General
  • Membership – Matters Requiring Special Resolution
  • Membership Dues, Termination and Discipline
  • Meetings of Members
  • Directors
  • Meetings of Directors
  • Officers
  • Notices
  • Dispute Resolution
  • Effective Date
Source: Corporations Canada:

PHA Canada’s Board of Directors, after a review of its current by-laws, will develop a new list of by-laws which may include elements from the list above along with items specific to the organization. Once the Board has identified and finalized the by-laws, these will be put up for approval by the membership.

PHA Canada’s Board of Directors plans to finalize a new set of by-laws for presentation to membership at the Annual General Meeting which will be held during PHA Canada's National Biennial Conference in Ottawa, Ontario in September 2013. Once the Board obtains approval of the by-laws, then the Board will file the new by-laws with Corporations Canada within 12 months of approval.

Why the NFP Act?
The Government of Canada has streamlined legislation to better meet the needs of the Canadian not-for-profit sector. The new rules are meant to be modern with increased flexibility for not-for-profit corporations.

According to Corporations Canada, federal not-for-profit corporations will benefit under the new legislation by gaining:

  • A clear set of rules that govern the internal affairs of federal not-for-profit corporations
  • Less red tape with simplified processes
  • More flexibility to make fundamental changes, such as amalgamations, that were not permitted under the old Act
  • A more objective standard for directors in carrying out their duties and responsibilities that will reassure individuals who decide to be on a board of directors
Source: Corporations Canada:

The NFP Act offers PHA Canada a legislated opportunity to review and update its existing by-laws and develop organizational documents that are modern and streamlined with a view to enhancing structure, governance and accountability.

For more information about the Canada Not-for-Profit Corporations Act, please visit the Canada Corporations site.

If you have a question about some aspect of how PHA Canada works please send it to us at:


Low-sodium recipe of the month: Pumpkin-hazelnut Tea Cake

If pumpkins are in season, roast a small pie pumpkin and puree the flesh in a blender or food processor for this loaf cake. Otherwise, use canned pumpkin. This cake makes a nice low-sodium New Year`s treat.

Pumpkin-hazelnut Tea Cake Recipe
Recipe and photo by Mayo Clinic StaffServing: 12 slices


    • 3 tablespoons canola oil
    • 3/4 cup homemade or canned pumpkin puree
    • 1/2 cup honey
    • 3 tablespoons firmly packed brown sugar
    • 2 eggs, lightly beaten
    • 1 cup whole-wheat (whole-meal) flour
    • 1/2 cup all-purpose (plain) flour
    • 2 tablespoons flaxseed
    • 1/2 teaspoon baking powder
    • 1/2 teaspoon ground allspice
    • 1/2 teaspoon ground cinnamon
    • 1/2 teaspoon ground nutmeg
    • 1/4 teaspoon ground cloves
    • 1/4 teaspoon salt
    • 2 tablespoons chopped hazelnuts (filberts)


Preheat the oven to 350 F. Lightly coat an 8-by-4-inch loaf pan with cooking spray.

In a large bowl, using an electric mixer on low speed, beat together the canola oil, pumpkin puree, honey, brown sugar and eggs until well blended.

In a small bowl, whisk together the flours, flaxseed, baking powder, allspice, cinnamon, nutmeg, cloves and salt. Add the flour mixture to the pumpkin mixture and, using the electric mixer on medium speed, beat until well blended.

Pour the batter into the prepared pan. Sprinkle the hazelnuts evenly over the top and press down gently to lodge the nuts into the batter. Bake until a toothpick inserted into the center of the loaf comes out clean, about 50 to 55 minutes. Let cool in the pan on a wire rack for 10 minutes. Turn the loaf out of the pan onto the rack and let cool completely. Cut into 12 slices to serve.

Nutritional analysis per serving

Serving size: 1 slice
Calories 176 Sodium 80 mg
Total fat 6 g Total carbohydrate 28 g
Saturated fat 1 g Dietary fiber 3 g
Monounsaturated fat 3 g Protein 4 g
Cholesterol 35 mg    

Latest PH news

Source: CBC In December 2012, the CBC covered a Children's Wish Event - Flight in Search of Santa. Isabelle Platnar was one of the happy children in search of the jolly fellow. During the event, the CBC interviewed Sarah Platnar, Isabelle's mother and member of PHA Canada's Pediatric Committee. [more]
Source: Ajax resident raises awareness about pulmonary hypertension. AJAX -- Amanda English, pictured with two of her young children, Charlotte and Peter, was recently diagnosed with pulmonary hypertension which restricts breathing and can cause heart failure. Ms. English must now wear an oxygen mask at all times. November 15, 2012 Jason Liebregts / Metroland ..... [more]
Source: WPXI PITTSBURGH — They are four friends with one big mission—to cycle across the country to raise awareness and money for a debilitating lung condition. They call themselves Team PHenomenal Hope, and they said they are inspired by the people living with pulmonary hypertension, or PH. “I was a healthy person, or at least I thought I was” said PH patient Patti Gordon. She was diagnosed after she had difficulty breathing. “When he first told me I h..... [more]
SOURCE: Seaforth Huron Expositor By Susan Hundertmark, Seaforth Huron Expositor Tuesday, November 27, 2012 10:04:06 EST AM Just shy of nine months when he died, Tristan Roman Mero, of Seaforth, is the inspiration of a fundraising campaign by two of his aunts for pulmonary hypertension. “We’re doing this in his memory,” says his aunt Angelika Sturzenegger, of Gowanstown. Angelika and her sister Andrea have created a personal page on the Pulmona..... [more]
Source: Hospital for Special Surgery (HSS) In patients with Systemic Sclerosis (SSc) – or scleroderma – a condition called pulmonary hypertension (PH) is a leading cause of death. Having PH means the blood pressure between the heart and lungs is elevated. The Need for New Tests for PH in SSc The current gold standard test for PH in scleroderma is called right heart catheterization (RHC). It is expensive and invasive. RHC also has significant associated risks. Other standard, no..... [more]
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The Pulse
Vol. 3 No. 1 JAN 2013
Connect with PHA Canada


Share your story
PH Resources: your help needed
Community Events Calendar

We are looking for articles to include in our Winter issue of Connections as well as in The Pulse monthly e-newsletter. Do you have a story, a recipe, tips on living with PH or something else you would like to share? Send it to us at

We are compiling a list of resources available to patients across the country, if you’ve taken advantage of any resources available in your province, or city (through government programs, other foundations etc.) please share the information with us so we can help others in your region. Email your resource info to:


(click the event to go to information for each event)
Louise Riley Library
6:45 PM - 8:30 PM
The Pulmonary Hypertension Support Group of the Southern Alberta Chapter meets the first Tuesday of each month* at the Louise Riley library located at.....

Jan 19
16 Woodglen Gate SW, Calgary
12:00 PM - 3:00 PM
Please note that the "Christmas Party", which was originally scheduled for December 15th, has now been moved to January 19th. The theme of the party w.....

Feb 02
Condo Party Room
1:30 PM - 4:00 PM
The PH support group provides a place where patients, family members and caregivers can share their experiences, learn about PH, treatments and how .....

Feb 05
Louise Riley Library
6:45 PM - 8:30 PM
The Pulmonary Hypertension Support Group of the Southern Alberta Chapter meets the first Tuesday of each month at the Louise Riley library located at .....

Feb 10
Community Meeting Room, Midtown Coop Grocery Store
1:00 PM - 3:30 PM
Please join us for an "Educational Afternoon" on Sunday, February 10th from 1:00 to 3:30 pm. The afternoon will be held at the Community Meeting Room a.....

Hosting a PH-related event that you’d like us to help you publicize? Submit your event for our events calendar and we will include it in upcoming issues of The Pulse (and Connections, depending on timing)

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