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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #10 November 2016 

PH Awareness Month 2016
In the last weeks, our community has shown the country what periwinkle-power is all about, making PH Awareness Month 2016 a PHabulous demonstration of our collective strength! We are pleased to report on November’s events and can safely say that this month has been one of our community’s busiest ever. This November PHA Canada engaged in our most significant public outreach to date: community-driven awareness and fundraising events took place from coast to coast; our members received lots of media coverage; social media was abuzz with #PHAwareness messaging; and PHA Canada’s new video PSAs were broadcast throughout the country… Mission accomplished!

Community Events
What do masquerade costumes, sailboats, cookie medals, dinner tickets, sparkles, and handprints have in common? A lot more than meets the eye during PH Awareness Month! Across the country, PHighters have been busy organizing awareness events and fundraisers in their communities. As unique as our members, these initiatives are fundamental to our awareness month activities, allowing PHA Canada’s message to reach thousands of people, while raising essential funds in support of our programs and services. We thank all the event organizers, volunteers, sponsors, and donors for supporting the cause and helping us create a better life for all Canadians affected by PH. Here is an overview of this year’s PH Awareness Month events:

Third Annual Run Walk, Swim or Bike/Spin PH Challenge, October 24 to November 3 (Bradford, ON) - Athletes in Bradford put on their walking shoes and swimming goggles in support of PHA Canada. Special thanks to Ruth Dolan, event organizer; BWG Leisure Centre, where the event was held; Sweet Handmade Cookies, who baked cookie medals to reward participants; and Bradford West Gwillimbury Mayor, Rob Keffer, for his participation in the awards ceremony.
 
Fourth Annual DINE for the CAUSE and Silent Auction, November 2 (Ottawa, ON) - In Ottawa, raising PH awareness comes with fine dining! Teri and Harry Kingston organized a joint charity dinner and silent auction with the Ontario Lung Association at Biagio’s Italian Kitchen. Special thanks to Ottawa Deputy Mayor Mark Taylor for attending the event and presenting a PH Awareness Month proclamation.
 
Be Brave and Sparkle, November 4 (Newmarket, ON) -The Berdan family is new to the PH community, bringing loads of passion for raising awareness and finding a cure! The Berdans held a sparkling PHundraiser on November 4th, raising awareness of PH and celebrating their daughter Mia’s strength. Special thanks to The Funnery Play Park & Café, The Move Fitness and Dance Studio, The DAS Group General Contracting, Wow Kitchens Inc., Julia Basden, and Chicago Title Insurance Company Canada for their invaluable contributions.
 
Sail-o-thon Benefitting PHA Canada, November 4 (Vancouver, BC) - Our Communications Associate, Mariane Bourcheix-Laporte, is passionate about the work she does every day in support of the PH community. She is also an avid sailor and decided to combine both passions by challenging herself with a sail-o-thon to raise funds for PHA Canada! Strong winds, big waves, and cold weather made her 40-Km sail a real challenge and truly impressive achievement!
 
Fourth Annual Talitha's Hope 4 a Cure, November 5 (Fort McMurray, AB) - PHighters in Fort McMurray took part in a memorable evening in support of the pediatric PH clinic at the Stollery Children’s Hospital and in celebration of its PHenomenal patients.
 
Annual Masquerade Ball, November 5 (Calgary, AB) - Nurse Gail Nicholson has made it her mission to raise awareness for the “real people behind rare disease” by organizing the Annual Masquerade Ball fundraiser in support of the PH community. A dazzling event complete with costumes, masks, and musical and dance performances, this fundraiser turns invisibility on its head by celebrating the people who fight against an invisible illness.
 
6-Minute Walk for Breath, November 12 (Ottawa, ON) - The Ottawa PH clinic held its annual 6-Minute Walk for Breath fundraiser and community gathering at the University of Ottawa Heart Institute. PH patients, caregivers, and supporters participated by walking the Institute’s 6-minute walk test route; those without PH wore masks and used weights to get a better sense of what doing the test is like for people with PH. Thank you to PHAC Board Member and Nurse Carolyn Doyle-Cox for organizing the event.
 
Fifth Annual Montreal PH Awareness Walk, November 27 (Montreal, QC) - Members of the Quebec PH community came together at the YMCA in downtown Montreal to participate in this community gathering and fundraiser benefitting the Montreal Jewish Hospital. Our Executive Director, Jamie Myrah, was in town for the event and walked alongside Fondation HTAPQ members and Montreal PH clinic professionals. Thank you to Nurse Lyda Lesenko for organizing the event.
 
Lend a Hand for PH Campaign
Members across the country also participated in our Lend a Hand campaign to educate those around them about PH. Participants asked friends and family to contribute tokens of support by signing or tracing their hands on specially designed posters and then making a donation to PHA Canada. This year, we redesigned our Lend a Hand materials to include an interactive online component. We were happy to see hundreds of people being tagged on Facebook and asked to “Lend a Hand” for PH! Thank you to everyone who lent us a hand by raising awareness of PH and funds to support our programs!
 
Other Events
Awareness tables, community gatherings, and municipal proclamations are some of the other ways our community helped to spread the periwinkle love this month. Awareness tables were held by: PHA Canada in Vancouver (Granville Island Market, Nov. 5-6), BCPHS in Kelowna (Kelowna Hospital, Nov. 9), and Juergen Buettemeyer in Ingersoll (local pharmacy, Nov. 15).

Our PH awareness flag flew in front of the Grand Falls-Windsor Town Hall in Newfoundland, in honour of lung transplant recipient Wendy King.

PHighters on Vancouver Island proudly wore purple and showed their support for the cause.

Some of our corporate partners also held special PH awareness events at their offices. Employees at Bayer participated in our Lend a Hand campaign during their PH and CTEPH awareness event on November 15th and Actelion marked 15 years of treating PAH in Canada with a special celebration on November 28th.

Finally, thank you to the municipalities of Grand Falls-Windsor, NL, Bradford West Gwillimbury, ON, Ottawa, ON, and Barrie, ON for issuing official PH Awareness Month proclamations. And a very special thanks to the members who requested them!

 
PH Awareness PSAs

Did you catch one of our new Public Service Announcements this month? This year, PHA Canada initiated its most significant public education campaign yet with the broadcast of two new, bilingual video PSAs on local and national television! Thanks to our ongoing collaboration with filmmaker Tyler Gamsby, we produced 30-second video PSAs that aim to raise public awareness of the symptoms of PH and the impacts of the disease on patients and families. We received incredible support from the following stations who aired our video PSAs throughout the month: Global BC, Rogers TV Ontario, Rogers TV New-Brunswick, TV Calgary, Shaw TV Vancouver, Shaw Multicultural Channel, and MaTV Quebec. Coastal Radio (Glace Bay, NS) and Roundhouse Radio (Vancouver, BC) also aired our audio PSA throughout the month of November. Click on the links below to view our video PSAs and, if you haven’t done so already, help us raise awareness by sharing them with your networks.
PSA #1 “Invisible Disease”  and PSA #2 “Play Time”


New CTEPH Education Material

We are very happy to announce new materials about chronic thromboembolic pulmonary hypertension or CTEPH. We have published new educational resources on our redesigned CTEPH site, which were developed in collaboration with the University Health Network and the Toronto CTEPH clinic. The new content includes Nurse Practitioner Anastasia Bykova’s article, "CTEPH: Curable Type of Pulmonary Hypertension," which was originally published in the Spring 2016 issue of Connections, along with additional resources about What is Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and Pulmonary Endarterectomy Surgery. The educational site also includes a new section on diagnosis for medical professionals. 


Pulmonary Hypertension Associated with Left-Sided Heart Disease (PH-LHD)
Contributed by: Mohamad Taha, PH Researcher
In this issue of Research Corner, we will address questions regarding pulmonary hypertension associated with left-sided heart disease (PH-LHD), which is classified as Group II pulmonary hypertension.
 
What is pulmonary hypertension associated with left-sided heart disease (PH-LHD) and how does it develop?
To understand PH-LHD, we must know how our heart and lungs interact. Different sides of our heart are responsible for pumping blood through our lungs, where it gets oxygenated, and then through our body. After our body uses the oxygen in our blood, the de-oxygenated blood passes through the right side of the heart (right ventricle), which pumps it into the pulmonary artery and then into the lungs. This usually happens at a relatively low pressure in the right ventricle and pulmonary artery. Blood is re-oxygenated in the lungs and then passes into the left side of the heart (left ventricle), which pumps it out into the rest of the body. This process takes place at 5 times higher pressures to allow proper delivery to the extremities.   
 
People suffering from left-sided heart disease can develop higher pressures in the left-heart or dysfunction of the heart valves, whose role is to prevent the blood from going backward into the lungs. This high pressure and/or valvular dysfunction (dysfunction of the heart valves) results in blood being pushed back into the lungs. This damages the blood vessels in the lungs and creates more resistance for the blood flowing in the right direction, eventually leading to high pulmonary pressures and PH. To continue reading, click here.
 


Rare lung disease patients fear lengthy negotiation trend will delay access to another new therapy, putting lives at risk - Canadians affected by pulmonary arterial hypertension (PAH), including those living with scleroderma, are pleased with the recent Common Drug Review (CDR) recommendation to reimburse Uptravi (selexipag).
Raise a flag, raise awareness - November is Pulmonary Hypertension Awareness Month across Canada and the Town of Grand Falls-Windsor will be raising a flag in hopes or promoting awareness.
Local call for awareness - A Kelowna woman is trying to getting the message out about a fatal rare lung disease and the importance of organ donorship.
DND contractor needs to keep working to pay for life-saving drugs - At 68, Harry Kingston would like to retire, but he can’t. While he continues to work as a contractor for the Department of National Defence as a senior national security adviser, he can afford the hefty cost of one of the drugs that is keeping him alive.
Taking medicine from bench to bedside - In a laboratory on the sixth floor of the Ottawa Hospital’s critical care wing, situated on the General campus, Dr. Duncan Stewart and his team of researchers are using stem cells in ways no researcher has before.
Newmarket residents support girl's PH battle - In August 2016, 10-year-old Mia Berdan was diagnosed at SickKids hospital with a rare condition called Idiopathic Pulmonary Hypertension. Pulmonary Hypertension (PH) is a disease affecting the arteries of the lungs.
Heart of a Champion - Sophia Ricci was announced as 2017 Stollery Children's Hospital CHampion Child.
6 ways to Raise Awareness During Pulmonary Hypertension Month - How do you raise awareness for a disease that few people know about?
Walking, Swimming, Spinning for PHA Canada - On November 3, Bradford West Gwillimbury Mayor officially proclaimed November as Pulmonary Hypertension Awareness Month in the municipality – and presented awards to the winners of the 3rd Annual week-long PH Challenge at the BWG Leisure Centre.

Oil-free Banana Bread
Courtesy of Fork Smart!, contributed by Kate McGoey-Smith, DipNrsg, MSW, RSW, FM  

This is a great healthy banana bread recipe that is low in salt, sugar, and fat. There’s no guilt from indulging in a slice of this moist and flavourful cake!
 

Gather wet ingredients in a small bowl:
3 large overripe bananas (hand mashed)
2 tbsp. lemon juice
 
Mix together then add:
1/3 cup apple sauce
1/2 cup maple syrup
 
Blend ingredients together with a spatula.
 
Gather dry ingredients in a large bowl:
2 cups flour (white or whole-wheat)
3/4 tsp. baking powder
3/4 tsp. baking soda
1/4 tsp. salt
 
Mix dry ingredients then add wet ingredients; mix well. Pour mix onto loaf pan lined with parchment paper. Bake at 350°F for 50 minutes until golden-brown. Check loaf with a wooden skewer; loaf is ready when skewer comes out clean. Cool on a wire rack and enjoy!
 
Nutritional information for 1 serving (1/12 loaf): 145 calories; 0.6 g fat; 34 g carbohydrates; 3.3 g sugar; 162 mg sodium; 4.2 g fiber; and 3.3 g protein. 

The Pulse 

  
Community Events: click to read more!

Toronto PH Support Group Meeting, Dec. 3 (North York, ON). Join the Toronto PH Support Group for its last meeting.
 
Christmas Concert Benefitting PHA Canada, Dec. 3 (Bradford, ON). Christmas concert benefitting PHA Canada organized by Suzanne Grondin's School of Music, followed by a reception.
 
London PH Support Group Meeting, Jan. 14 (London, ON). The London PH Support Group will hold a special meeting Saturday January 14 with guests Erik Sansom, humourist and Lisa Stanley, Psych BA, B. Ed and founding members of Stratford Toastmasters.
 
Prevent and Reverse Heart Disease, Apr. 28 (Calgary, AB). A one night seminar with Dr. Caldwell Esselstyn Jr., M.D. hosted by Fork Smart in Calgary, AB.
 
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!
 

Community Photo of the Month

This month, our "community photo" is a video featuring PHighters and PH caregivers who share their experiences and explain how PH impacts their lives. To view the video, which premiered at the 4th Annual Masquerade Ball, click here.
 


 
CALL TO ACTION!
Take Action PAH Advocacy Campaign


The Take Action PAH advocacy campaign is ongoing. We have joined forces with the Scleroderma Society of Canada (SSC) to advocate for access to treatment for all PAH patients in Canada—no matter their financial situation, province of residence, or private insurance coverage. Together, our organizations have created a joint microsite that features tools to help members of our community express to provincial governments the importance of access to optimal treatment for PAH. Please visit www.takeactionPAH.ca to learn more about our current advocacy campaign and how you can get involved. 
 
 
What Does PHA Canada Mean to You?
How has PHA Canada made a difference in your PH journey? What is the most valuable service that PHA Canada offers? How has PHA Canada impacted your life? We want to know! As part of our planning for 2017, we want to know what PHA Canada means to you. Contact our Communications Associate, Mariane, at mblaporte@phacanada.ca to tell us what being a part of PHA Canada means to you. We look forward to hearing from the PH community and sharing the periwinkle love! 
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