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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.5 #3 Mar 2015
 
Rare Disease Day - celebrating our RARE loved ones!
Did you know that nearly 3 million Canadians live with a rare disease? On February 28th we honoured our RARE loved ones by sharing their stories and triumphs through social media. Some of these individuals were Rita, who has PH due to a Scimitar syndrome, a heart malformation found in only 2 in 100,000 births. We met adorable Adam, who lives with PH as well as ADHD and Autism. Finally, we featured Ella, who has a congenital heart defect and PH. You can meet all of our RARE loved ones on our Facebook page at facebook.com/PHACanada. Thank you all for helping to raise awareness of rare diseases in Canada!

Paint Canada Purple: illuminating Canada's monuments 
World PH Day is just two months away on May 5th. We’re excited to announce that thanks to Ambassador Gail Nicholson, the Okotoks Town Hall in Okotoks, AB will be illuminated in periwinkle on that day! There’s still time to request that YOUR local monuments be lit in purple: read more about the campaign and use our simple template letter to make your requests. Help us light all the major monuments in every Canadian city on May 5th: visit phacanada.ca/paintcanadapurple to learn more!

Conference Countdown: What's NEW this year?

Sessions that will help you:
-  Take charge of your emotional wellness
-  Navigate friendships and dating relationships
-  Communicate effectively and powerfully
You’ll be the first to experience:
-  A live low sodium cooking demonstration
-  Movie and video game night with popcorn and blankets!
You’ll meet:
-  Heroes and mentors in the world of PH
-  PHriends from across Canada
-  Others like you


At Conference, we also celebrate the individuals in our community who make a difference. If you know someone who deserves an Outstanding Community Member Award, please NOMINATE them today! Learn more about everything the Conference experience has to offer: visit phacanada.ca/2015Conference

What Conference did for me: Sandy's message
PHA Canada Ambassador Sandy Vachon is looking forward to meeting friends new and old and Conference. CLICK on the video to watch what Sandy thinks is the most important thing you can gain from the Conference experience.

Pregnancy in PAH Patients Focus of Recent Study - A recent systematic review highlights that pulmonary arterial hypertension (PAH) is an absolute contraindication for pregnant women.

CTEPH Patients Are Better Assessed During and After Exercise - According to a recent study published in the journal Heart, RV afterload increases in patients with CTEPH during exercise, resulting in a marked reduction in RVEF and SV reserve.

Study Reviews Novel Molecular Target Advancements for the Treatment of Pulmonary Arterial Hypertension - A group of pulmonary medical specialists in France have conducted a robust review study that examines the increasing number of potential novel therapeutic drug targets for patients with PH.

Arena Pharma Begins Dosing PAH Patients with Ralinepag in Phase II Study - Arena Pharmaceuticals, Inc. just announced they have begun dosing patients in a Phase II clinical program for ralinepag.

Introducing our Ambassadors: Gail
Gail Nicholson is a nurse coordinator who has been involved with PH since the mid 90s, when Flolan first became available in the ICU’s! We’re grateful to Gail for her support as an Ambassador.

“I graduated from nursing school in 1988, and am the mother of 3 and grandma of 2. My nursing career led to 18 years in ICU/ER, and landed me in the PH Coordinator role in 2007. I have participated in research, development and fundraising to help find a cure, and take great honour in organizing an annual Masquerade Ball  in Calgary AB, for over 200 esteemed guests, to "Raise Awareness for the Real People behind Rare Disease." I believe that awareness and education are the cornerstones to early diagnosis and finding a cure, and am honoured to be a part of the PHA Canada family.”

NEW PHA Canada website!

PHA Canada’s website has a brand new look! Our website features lots of excellent information on living with PH, resources for patients and caregivers, a listing of all PH clinics across Canada, and much more. Please take a look at our new site today, and feel free to send us your feedback anonymously on our ‘Contact us’ page
Thai Peanut Noodles and Veggies
From Kate McGoey-Smith of www.forksmart.org


Peanut Sauce:

1/3 C rice vinegar
1/3 C water
1/3 C low salt soy sauce OR Braggs’ liquid aminos*
2/3 C smooth peanut butter – no salt (just peanuts)
1 tSp hot sauce
Blend together with hand held blender and put into tall squirt plastic bottle for easy dispensing. Refrigerate after use.
Veggies: Make an assortment of your favourite steamed veggies from fresh or frozen.
Noodle: Choose your whole grain preference such as a whole wheat spaghetti or brown rice noodles, and cook accordingly.
Layer veggies over noodles and add sauce or toss all together, and serve hot!
Ed. Note: Low-sodium soy sauce should still be used in measured quantities to ensure that servings do not contain too much sodium. Remember to check nutritional content labels.

The Pulse 

  
Meet our Knowledge Philanthropists
This month’s Knowledge Philanthropist is 15 year old Arjun, who is developing outreach and awareness materials for PHA Canada.

“Over the past year, I have been doing research for my science fair project on dietary and lifestyle interventions on PH, specifically looking at the DASH diet and lifestyle program. I ended up presenting my research at the Canadian Cardiovascular Congress, where I first came into contact with PHA Canada.
I had never really heard of PH before doing my project. While doing preliminary research, I was startled to see the facts about PH: it appeared to be a seemingly incurable disease that affects thousands of Canadians across the country. I think that PH is an important disease that is not talked about enough in our community today. When I had a chance to talk to some patients with pulmonary hypertension, it help put a human face on this disease.  This inspired and motivated me to take action. Now I know a lot more about PH, and that the people in the community are PHighters. Though this will be a long and hard battle, in the end, we will beat the disease. I decided to volunteer with PHA Canada because I support the work they are doing, and want to help the PH community in any way I can.”


Community Events
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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