PHA Canada E-Newsletter: Vol 4 #9 Sept 2013

Conference Update

Pre-registration for Conference has now closed. Further registrations may be accepted depending on available space. If you have not yet registered but are interested in attending, please email us at

We are extremely excited about the new sessions and offerings at this year’s Conference, which are possible only with the support of our sponsors. We’d like to acknowledge and thank our sponsors:

Silver level – Actelion Pharmaceuticals Canada, Unither Biotech
Bronze – Bayer Inc, GlaxoSmithKline Inc, Pfizer Canada, Shoppers Drug Mart Specialty Health/Pharmaprix 
General – British Columbia PH Society, McKesson Canada
The continued support of our sponsors is what allows us to deliver a better Conference. We can’t wait for you to be there to enjoy it!

Conference Teaser
NEW this year: Family photo sessions & the premiere of ‘Out of Breath’
Having a family member struggle with PH is even harder when the patient is a young child or a parent to children. To recognize and support our courageous families who are living and thriving with PH, we’ll be offering a unique “Family photo session”. Here, families will be able to have a professional photo taken to celebrate their togetherness!

We’re also proud to announce that our Conference will present the premiere screening of ‘Out of Breath’ – a short feature film on pulmonary hypertension co-produced by PHA Canada and the Victoria School for the Arts in Edmonton, Alberta!

News and events

A unique way to give – did you know that you may donate an unwanted car to charity? The Pelley family recently found themselves with an extra car after mother Pat passed away due to PH. They shared this story:

Pat Pelley was a mom, wife and nanny, and above all else, a true nurturer.  She had a heart of gold and unrivaled generosity that never wavered even during her battle with PH.  Pat would have been delighted that her car was responsible for the new partnership between PHA Canada and Donate a Car Canada.  She would hope others would likewise donate.  She will be sorely missed by all who knew her, and so proud of what she started.
                                                            ~ The Pelley Family, Etobicoke, Ontario

Through Donate A Car Canada, the Pelleys were able to donate the vehicle and issue the proceeds from the car to PHA Canada. We’re glad that such options exist and that unwanted cars can be transformed into charitable gifts.

Thank you to St. John Fisher JR. Elementary School
In July, we were honoured to receive a $257 donation from St. John Fisher Elementary in Quebec. The school had conducted a "Pennies for PH" drive. One special young man named Zueben had collected over $25 in pennies, all of which he donated to this drive. Fundraisers like these have so much heart, especially when they are led by students. An enormous thank you goes out to each and every member of the St. John Fisher school community.

Coming soon: Connections Magazine!

You will love the personal stories and photos in September’s issue of Connections magazine, which features some of Canada’s youngest PH community members. It will be mailed to all members: if you are unsure of your membership status, email Copies of the magazine will also be available at Conference.

Inside PHA Canada: Awareness Month preparation!
Last year, support groups across Canada held 6 Minute Walk for Breath events to recognize November as PH Awareness Month. If you would like to organize a 6 Minute Walk event in YOUR community, we will have kits available at Conference! We have also recently developed an in-depth fundraising guide that will help you to plan and execute your own unique fundraiser or awareness activity.

Long-time PHA Canada supporter and sponsor Actelion will once again be matching all of the funds raised during Awareness Month, up to a maximum of $10,000. We know that with the help of our united community, we can reach and exceed that goal.

For more information on Awareness Month, visit our website!

We also wish to acknowledge and thank our Awareness Month sponsors. They are: Actelion Pharmaceuticals Canada, GlaxoSmithKline Inc, Pfizer Canada, and Unither Biotech

Inside PHA Canada: Scholarship Fund Contributions
This year, at total of almost $33,000 was awarded in Conference scholarships. This amount was dispersed to nearly 50 PH patients and families who would have not otherwise been able to attend Conference. This assistance would not be possible without contributions to the Scholarship fund. We would like to recognize and give a heartfelt thank you to those who contributed to the fund this year. They are: Bayer Inc  who created the Bayer Inc Patient Scholarship Fund, and Lynn-Marie Cox who contributed to the general fund with proceeds from a fundraiser she held for her birthday.  On behalf PHA Canada, and our scholarship recipients, thank you for your contributions.

Resource Tip of the Month - new materials!
When holding any sort of fundraising or awareness event, it’s important to have materials on hand that support your cause. As PH is such a rare disease, it is particularly challenging to explain. This is where PHA Canada’s informational materials come in. We have recently produced a new brochure, informational flyer, magnets and keychains. We’re also working on pocket-sized wallet cards, which will be available at Conference. These materials are all made to help inform your community about the challenges of your disease. To order materials reach out to us at

Low Sodium Recipe - Brown Bean Soup

We received this great recipe from the Mitro family: it’s inspired by the nutritional session that they attended at our 2011 National PH Conference. This soup provides a perfect transition into the colder weather months.

Ingredients: serves 4
-1 clove garlic, chopped
-1 onion, chopped
-1 stalk celery, chopped
-2 carrots, chopped
-2 large potatoes, peeled, chopped
-28oz can reduced-salt stewed tomatoes
-19oz can of romano beans*
-900mls of sodium-reduced broth (vegetable or chicken)
-1 tsp dried oregano, pepper to taste
Method: Combine all of the ingredients in a pot and bring to a boil, stirring occasionally. Simmer until vegetables are cooked through. Use a hand blender or food processor to puree the soup, and you’re done! Cooked pasta is also a nice addition to this soup.

Nutritional info: per 1 serving – 127 calories, 0g fat, 0mg cholesterol , 120mg sodium, 29g carbohydrate, 4g fiber, 3g protein 

*Editor’s note: Make sure to check the label for sodium content in the beans and buy low salt or no salt added beans. Better yet, buy dry beans and soak overnight for a no-salt alternative.

PH News 
COMP student inspires, educates while battling PH
When Sean Wyman was diagnosed with pulmonary hypertension at 18, doctors told him his illness would prevent him from attending school.
Radlett mother Hollie Sassienie's aim to raise funds for PHA
A mother who was told she could die during her pregnancy wants to use her experience to help others.
Susie Kozisek, Daughter's Gestational Carrier, Gives Birth To Her Own Grandchildren
Ashley Larkin was in the delivery room when her twin daughters Hallee and Hadlee were born, but she wasn’t the one giving birth.
Bayer Wins Panel Backing for Pulmonary Hypertension Drug
Bayer AG (BAYN)’s experimental lung drug won the backing of U.S. regulatory advisers to treat two forms of pulmonary hypertension.
For more PH 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:

Community Events: click to read more!

Sept 07Toronto PH Support Group Meeting
Condo Party Room, 1:30 - 4PM

Sept 14: London PH Support Group Meeting
London Public Library, Westmount Branch,1:30 - 3:30PM

Sept 20:
 3rd National PH Conference
All Day

Oct 05: Toronto PH Support Group Meeting
Condo Party Room, 1:30 - 4PM
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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