The Pulse: October 2013

3rd National PH Conference: reflections on a great weekend

Two weeks ago, PHA Canada hosted our most eventful Conference to date. We had approximately 250 attendees and more than 50 speakers. This Conference had more children and youth attendees than any previous event, who enjoyed several surprises for kids and families! Several new sessions at this Conference, focusing on alternative therapies and diet for health, were received with rave reviews. Finally, keynote speakers like 15 year old Matt Moniz helped us all to see what is possible when we channel our energy towards this cause.

We are grateful to each individual and family who made the trip to join our Conference: your energy and spirit is what makes Conference worthwhile. We are inundated with inspiration to keep fighting the PHight, and hope that you are too. We’d also like to acknowledge and thank our Conference sponsors at all levels, for making the incredible weekend possible. They are:

Silver level – Actelion Pharmaceuticals Canada, Unither Biotech
Bronze – Bayer Inc, GlaxoSmithKline, Pfizer Canada and Shoppers Drug Mart Specialty Health
General – British Columbia PH Society, McKesson Specialty

News and events

Burden of Illness Survey

As you may know, PHA Canada launched a burden of illness survey on September 25th. We are pleased that many patients and caregivers have already taken the time to complete this very important survey, which will help us to better understand the needs of our community and have the statistics to back up those needs and concerns as we create awareness campaigns and advocate at the government level. The survey close date has been extended until October 25, 2013. If you have not yet spent 20 minutes on this extremely important support task, please set aside a little time and help our the community by making your voice heard. Whether you are a patient or a caregiver, we need your story. Please here click to share it.

Pennies for PH – Campaign update
Last year, when the demise of the Canadian penny was announced, many of our members had the same idea: Why not collect all those pennies and use them to help make change for the PH community? Thus, the Pennies for PH campaign and contest was created. Pennies were gathered from February to November 30, 2011, and the grand total of pennies came to 622,697: that’s $6226.97!
Thank you to all those who participated: your efforts are inspiring to our greater community. Group and individual winners and a write up of the full campaign will be published in the 2013 Annual Report, which will be mailed to all PHA Canada members in good standing in early December.

Inside PHA Canada

Board Changes – The PHA Canada Board has undergone some changes as a result of our AGM and Board meetings at Conference. We would like to extend a very warm welcome to Ruth Dolan, Harry Kingston, Bill McLay and Don Moores who have joined our Board as Directors. We wish to thank outgoing members Darren Bell, Darwin Hanofski, Rita Hebert and Maureen Tymkow for their years of dedicated support.

In a reflection of PHA Canada’s new bylaws, we are transitioning from utilizing the roles of President/Vice-President to Chair/Vice Chair. This represents a shift of the PHA Canada Board into a more traditional governance role. We are pleased to announce Dr. Sanjay Mehta as our new Chair, and Roberta Massender as Vice-Chair. Charanpal Brar will remain in the position of Treasurer, and Lynn-Marie Cox in the position of Secretary. We also would like to thank Frank Poon for his service as PHA Canada President from September 2011-September 2013.

A brief message from our new Chair, Dr. Sanjay Mehta:
"Hello fellow Canadian PH Community members! Since being involved in PHA Canada since we founded it in 2008, it is a pleasure to now serve you as the new Chairman of the Board of Directors. From separate small regional and provincial PH support groups, we have together built a truly national organization over the past 5 years. Through working together, I believe we can make PHA Canada the definitive resource and voice nationally for any PH patient, family, healthcare provider, pharmaceutical/pharmacy provider, media and government. I am honoured to be a part of this movement."

CADTH Submission
In the late weeks of September, we learned that the Canadian Agency for Drugs and Technology in Health (CADTH) is undertaking a review of the entire therapeutic area of pulmonary hypertension. This is a significant issue because the decision set forth by CADTH on this matter will ultimately determine future PH drug approvals in Canada. PHA Canada was invited, on a very short timeline to make a submission to CADTH as a patient group providing patient and caregiver input in to currently available therapies and what living with PH is really like. We would like to extend our thanks and gratitude to those patients and caregivers who supported our CADTH submission by offering their valuable personal experiences. Thanks to your input we were able to meet our deadline and submitted a lengthy account of the realities of living with PH. We will have several other opportunities for input as the review takes place and will be continuing to monitor the review so that we can ensure the best decision possible is taken for our community. We will continue to update you on this process as we work through it.
If you are interested in participating in similar advocacy activities (including providing us feedback for submissions when drugs are being approved), please contact us: we will are currently working on a submission for a drug that is in the approval pipeline.

Resource Tip of the Month - Get ready for Awareness month
It’s October, which means that November Awareness Month is just a few weeks away. PHA Canada holds all of the necessary resources for community members to recognize Awareness Month in their own way and in their own community. Here are just a few ideas:

Hold a 6-Minute Walk for Breath – order your materials kit by sending us an email!
Create your own special fundraiser or awareness activity – we can help if you need ideas.
Advocate to have your own city or town declare November as official PH Awareness Month. In 2011, Ruth Dolan was successful in having 21 different cities and towns name November as official PH Awareness Month! Learn how Ruth did it and check out a template letter on our website.

Remember: raising funds during Awareness Month makes twice the impact. This is because long-time PHA Canada supporter and sponsor Actelion will once again be matching all of the funds raised throughout November, to a maximum of $10,000. We’re excited to see what our united community can do for 2013 Awareness Month: email us today at phinfo@phacanada.ca to get involved.

Low Sodium Recipe - Thanksgiving Harvest Lasagna

We are so grateful to Kate McGoey-Smith, who not only presented a fantastic session on diet and PH at Conference, but has volunteered to continue to provide recipes and support to our community. This recipe features a healthy lasagna that fits the fall season.

Ingredients:
□ Onion – 1 chopped
□ Mushrooms – 8 oz sliced
□ Broccoli – 1 head chopped
□ Carrots – 2 chopped
□ Red bell peppers – 2 seeded & chopped
□ Corn – 1 can rinsed & drained
□ Frozen Spinach – 16 oz thawed & drained
□ Roma tomatoes – 6 sliced thin
□ Sweet Potatoes – 2 cooked and mashed
□Tofu – Silken Lite – 1 package
□ Cashews – raw 1 c. ground (optional)
□ Lasagna noodles – whole grain – 2 boxes
□ Garlic – 1 small head, all cloves chopped or pressed
□ 1/2 tsp cayenne pepper
□ 1 tsp each oregano, basil, rosemary
□ Tomato Sauce – 2 (700ml) jars Healthy Choice Traditional (0g.fat)

Method: Saute onion and garlic at high heat for 3 mins. Then add mushrooms and cook until onions are soft and mushrooms release liquid (may use a bit of water so there is no sticking). Transfer mixture from pan to large bowl retaining liquid in cooking pan.

Saute broccoli and carrots for 5 minutes and add to mushroom bowl. Saute peppers and corn until just beginning to soften and then add to mushroom bowl.
Remove tofu from box, drain by wrapping in paper towel – break up in towel and then mix into vegetable bowl. Add all spices to vegetable bowl and combine.
Assemble lasagna:
▪ Cover bottom of dish with layer of sauce
▪ Add layer of noodles (noodles uncooked)
▪ Cover noodles with sauce
▪ Spread vegetable mixture over the sauced noodles
▪ Cover with a layer of noodles and another dressing of sauce
▪ Add spinach and then on top of it layer with mashed sweet potatoes
▪ Add a another layer of sauce and a final layer of noodles and a last topping of sauce. Cover entire lasagna with a layer of roma tomatoes.

Cover with foil and bake for 45 minutes. Remove foil, sprinkle with the cashews (optional) and return to the oven for 15 minutes. Let lasagna sit for 15 minutes before serving!

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