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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.5 #2 Feb 2015

Carolyn, Amanda and Cathy at Quiz night!

Quiz Night Fundraiser for PH in Whitby!
Carolyn Mathur and supporters from PHA Canada’s Toronto Chapter recently held a Quiz Night fundraiser at Brooklin Pub in Whitby, ON. For $15 per person, each attendee enjoyed food and drinks and participated in the quizzing. All proceeds from the event will go directly towards education, advocacy and support for PH patients. We are inspired by Carolyn’s team and this PHantastic fundraiser as a kick-off to the 2015 year! Way to go, ladies!

Paint Canada Purple: Edmonton's High Level Bridge
World PH Day is on May 5th, and we’re so excited to announce an incredible kick-off to our Paint Canada Purple campaign. Last year, our community advocated to have several monuments illuminated in periwinkle for May 5th. This year, we want to grow this campaign by illuminating ALL major monuments in every Canadian city! PHighter and Board secretary Lynn-Marie has gotten a head start by achieving the scheduled illumination of the High Level Bridge in Edmonton. Congratulations to Lynn-Marie! Lighting up the monuments in YOUR community could be as simple as sending this easy template letter. Visit phacanada.ca/paintcanadapurple to learn more!

Conference Countdown: 90 days away!
A live cooking demonstration, chair yoga and a movie night. Our 4th National Conference will feature these exciting activities and much more! If you want to learn how to live well with PH and connect with new and old friends, REGISTER for Conference online today. Our Conference registration brochure will also be arriving in your mailboxes this month. Learn more about everything the Conference experience has to offer: visit phacanada.ca/2015Conference

What Conference did for me: Tarya's message
If don't think that going to Conference is for you, you're not alone. PH patient Tarya was afraid to go to Conference because she was worried about seeing others who were very sick. Click to watch Tarya's video to see what she found instead.


Mohamad Taha is a PhD student under the supervision of Dr. Duncan Stewart at the University of Ottawa, who contributes a bi-monthly Research Corner to our Pulse e-newsletter.

In this issue of Research Corner, I will provide some insight into the challenges facing PH research, as well as answers to some of the questions posted on the PHA Canada Facebook page page.

Why do we still not have a cure for PH?
In order to be able to look at curing a disease, scientists have to know why/how the disease occurs and how it progresses, which requires understanding which systems, organs and cells are involved in the generation of the disease. This knowledge allows the discovery of ways to stop and ultimately reverse that progression of the disease. In PH, there are some challenges we face with understanding how/why PH develops, that limits our ability to develop a successful cure.
 
The first challenge is the origin of PH: PH is classified into five groups and each has its own subgroups.
On the clinical level, patients can appear similar, displaying increased pulmonary artery pressure, increased pulmonary vascular resistance and right ventricle thickening. However, each subgroup of PH patients is unique at the cellular and molecular level, due to different causes of the disease. Click to read entire article.

Even with Disease-modifying Treatments, Anesthesia Risks for Children with Pulmonary Hypertension Remain High According to a study conducted by a team of researchers at the Hospital for Sick Children, children with PH are at high risk of serious complications with anesthesia and surgery.

Ascendis to Start Phase 1 Study of PAH Treatment Ascendis Pharma A/S is beginning its phase 1 single ascending dose study to evaluate a potential treatment for PAH.

Could a National PH Registry Improve Research and Treatment in America? Russian Registry Shows Promise in New Study Initial results are now available from a national registry established in Russia to track individuals with PH.

United Therapeutics and DEKA Sign Agreement for New PAH Remodulin Delivery System United Therapeutics Corporation has signed an agreement with DEKA Research & Development Corp., to continue the development of a breakthrough technology for the subcutaneous delivery of the Remodulin (treprostinil) Injection.


Introducing our Ambassadors: Teri
PHA Canada Ambassador Teri, from Ottawa, tells her story.


“I was 50 when I married the man of my dreams. Harry and I had no illusions at that age of reaching our 50th anniversary, but joked about looking forward to at least 30 golden years of marriage. All of that changed when my husband was diagnosed in November 2012 with PAH. As a speaker, I am trained to zoom in on life's defining moments to create the powerful stories that connect audiences and move people to action. Now I found myself in a story neither of us ever wanted. The caregiver role tugs on the heart in so many ways. We don't suffer the physical ailments of the patients, but suffer from watching those we love struggle with all that PH throws at them on a daily basis. My way of coping is to reach into my professional toolkit and commit to putting my speaking and coaching skills to work on behalf of all members of the PH community through advocacy. Learning to tell the PH story myself and helping our members tell it effectively to their medical communities, their families and friends is one way I can add my voice and amplify awareness throughout Canada. I am very proud to be part of this team.”

Fundraising materials for your events!
If you’re planning a fundraiser or awareness event, PHA Canada is here to help. You can connect with our office to receive informational materials about PH, bracelets and pins, and even apply for a seed grant to help you to host your event. Visit phacanada.ca/store to order FREE materials, or write to slowe@phacanada.ca to ask for event support.


Tomato chutney & caramelized onion hummus pizza
We hope you enjoy this delicious and healthy pizza recipe from Kate McGoey-Smith!

Tomato Chutney:
½ onion- thinly sliced
3 cloves of garlic, minced
2 pints of washed, whole grape or cherry tomatoes
¼ C apple cider vinegar
1 tbsp of maple syrup
Pinch of ground allspice
Pinch of ground cinnamon
Pinch of freshly ground pepper

In a medium sauce pan over high heat – cook onion until brown slightly and reduce heat as onion continue to soften, brow and caramelize. Then add remaining ingredients. Cook until tomatoes soften and the mixture thickens. Remove from heat when the excess liquid is completely absorbed.

Caramelized Onion Hummus
1 large onion, diced
1 15 oz can of no-salt added chickpeas – rinsed and drained
2 large cloves of garlic
Juice of one fresh lemon
1 ½ tbsp of dijon mustard
Freshly ground black pepper to taste

Cook onion at high heat and stir until golden brown (may need to add a bit of water to avoid sticking) and then remove from heat. Set aside. Blend together all other ingredients in food processor until smooth. Mix hummus and caramelized onions together by hand. Spread Caramelized Onion Hummus over a low fat whole wheat pita and top with the Tomato Chutney – place on parchment lined baking sheet at 350F for 7-10 mins until crust is crispy.
*Ed. note: be sure to verify sodium contents on the pita packaging. An alternative could be a low-sodium tortilla.

The Pulse 

  
Meet our Knowledge Philanthropists
Last year, in order to help complement the skills in our office, PHA Canada began a Knowledge Philanthropy program. A Knowledge Philanthropist is someone who gives of his or her knowledge, skills and time towards a specific PHA Canada project to help further PHA Canada’s mission. 
In order to celebrate and recognize these individuals, many of whom are also learning about PH through their volunteer roles, we will be introducing one Knowledge Philanthropist and their project in this column every month. This month’s volunteer is Lenny, who has taken on the impressive task of becoming PHA Canada’s treasurer for a two year period. In Lenny's own words:


"I am a Vancouver resident who has been involved for decades with not-for-profit organizations both as a volunteer and as a professional.  After completing my Bachelor of Science degree in mathematics from UBC, I have moved on to various roles in the accounting field and am currently applying my skills in the health research sector.  Health awareness and community involvement are issues that are very dear to me.  I am excited to have the opportunity to contribute to the ongoing development of PHA Canada."  
 

Community Events

Finch Winter Carnival: Sean Mullin and his community will be hosting an exciting Winter Carnival on Feb 7 & 8 at the Finch Community Arena (4 John Street, Finch, ON K0C 1K0). There will be a spaghetti supper and dancing on Saturday, and a breakfast and skating on Sunday. All proceeds will go to PHA Canada, and in addition, a local bank is MATCHING funds raised! Don't miss the Finch Winter Carnival: email
mullinfamily12@gmail.com for more info.
 
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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