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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #6 June 2016 
Announcement: PHA Canada Eastern Symposium (Fall 2017) 
PHA Canada believes in bringing the PH community together. We are committed to creating opportunities for our members to learn more about PH and to make valuable connections with one another. We also believe that such events should be made available to as many people–in as much of the county–as possible. So in 2017, instead of having a national conference, PH Canada will begin hosting annual regional events in different parts of the country.
 
We are happy to announce that the first Eastern Canada Pulmonary Hypertension Symposium will be held in Toronto in Fall of 2017. A Western Canada Symposium will follow in 2018–stay tuned for more details! PHA Canada members will continue to be eligible to receive scholarships to help them attend symposia in their region.
 
We are very excited to be bringing new events to new parts of the country, in addition to continuing to support the great work of our provincial partners, BCPHS and HTAPQ. We look forward to working with our members and supporters in all provinces to help give shape to these special events! For more information on PHA Canada conferences and symposia, please click here.

Summer Events: Bringing Community Together for the Cause
Our Ontario members have been busy bees in the last weeks. Supporters in Long Sault and Ajax participated in two important fundraising events. We’re happy to share sunshine-filled photos from these fundraisers and celebrate the periwinkle-powered energy of their organisers! Thank you to everyone who contributed to the great success of the Volleyball Tournament in Memory of Brenden Brinkworth and the Third Annual PHA Canada Run/Walk for Research!
 
Volleyball Tournament in Memory of Brenden Brinkworth
(June 11th, Long Sault, ON)

The sky was cloudy on Saturday, June 11th, but that didn’t stop supporters from getting their game on and having some PHun at the Volleyball Tournament in Memory of Brenden Brinkworth. With over $2,200 raised, this year’s event was another amazing success! Thank you to Shawna Brinkworth who organized the event in memory of her brother Brenden, who was taken away by PH in January 2015. Shawna has organized multiple fundraisers to benefit PHA Canada and we salute her positive energy and generosity! We also thank everyone who participated in, donated to, volunteered for, and sponsored the event. Shout out to Tippy Kanoo, Pommier Jewellers, Rurban Brewing, Best Western Hotels & Resorts, Mrs. B's, Jenny Dopson, Melanie Leger, Gina Pruner, and Edward Jones. Special thanks to Mike and Krista from O'Neill's Pub without whom the event would not have been possible!

Third Annual PHA Canada Run/Walk for Research
(June 25th, Ajax, ON)

For a third year in a row, the Mohammed Family organized a walk/run fundraiser to raise funds for PHA Canada’s support and research programs. This year, over 110 supporters gathered on the shores of Lake Ontario to run/walk for the cause and cheer participants along. Thanks to the efforts of organizers Renae and Joseph Mohammed, the event raised over $11,000, half of which will go towards research. We are thrilled that so many supporters gathered to raise hope for those affected by PH in Canada. Thank you to the Mohammed family for their continued support of our activities and their commitment to supporting PH research. We are grateful to everyone who contributed to making the event such a huge success! 

Inside PHA’s 2016 International Conference
The Pulmonary Hypertension Association’s International PH Conference and Scientific Sessions took place in Dallas, Texas from June 17th-19th. The conference marked PHA’s 25th anniversary and the retirement of their first ever employee/CEO, Rino Aldrighetti. Our Executive Director, Jamie Myrah, attended the event and reflects here on the conference’s theme, 25 Years of Progress: Changing the History of PH:
 
What a privilege it was to attend my first International PH Leaders Summit and PHA’s International PH Conference. It was a thrill to get to experience some of PHA’s story, in particular the journey of the founding women from a simple kitchen table to a hotel ballroom full of cheering patients, caregivers, scientists, and advocates. It was remarkable to hear of the many accomplishments of the international PH community – from zero treatments less than 30 years ago, to 14 FDA-approved therapies today; from just one patient association in the US to now over 80 worldwide. It was delightful to be a part of the sea of smiling faces and the flood of social media posts! 
 
My favourite session of the conference was the opening keynote address, which featured three young people whose PH journeys had each been dramatically altered thanks to the advancements made in the diagnosis and treatment of PH in the past 20 years. Their university degrees and growing families were a testament to the hope that exists for people with PH. My hope is that it gave the PH kids in the audience starry eyes and heads full of big dreams. This same feeling carried through to my favourite moment of the conference, which occurred during the closing address two days later. Here we met two PH patients who, when they first met at conference in 2012, were each learning to cope with the challenges of living alone and growing older with a serious progressive illness. The prospect of falling in love wasn’t an easy one, but they persevered with the belief that having PH isn't a reason to deny yourself the things that make life worth living; if anything, it's a reason to embrace them even more.” Their engagement story was the perfect happy ending to a profoundly hopeful weekend.
 
I’m very grateful that the conference gave me the chance to spend time with some of our extended-Canadian PHamily. I appreciate them telling me their own stories, reflecting on their most meaningful conference experiences with me, and introducing me to their PHriends. Thank you to everyone for making my first PH conference so memorable!
Summer Projects
We are happy to introduce Faria Khan and Rahul Bhundhoo, who have joined our team for the summer and are helping to put important projects into motion.
 
University of Saskatchewan Masters of Public Health student, Faria Khan, is completing a practicum with our Early Diagnosis Program: “I am 24 years old, and was born and raised in Calgary, Alberta. I completed my undergraduate degree in Biological Sciences at the University of Calgary and am currently a graduate student at the University of Saskatchewan, completing a Master’s in Public Health. I have joined PHA Canada to better understand how the role of a public health professional materializes in a “real world setting,” when theory is turned into practice. I am currently working on the Early Diagnosis Program, building upon the work of previous PHA Canada practicum students. The aim of this program is to raise awareness of PH among health care providers and potential patients to allow for shorter delays between the appearance of symptoms and diagnosis. This will help ensure that PH patients receive the care and attention they need. Interning with PHA Canada will provide me with the tools I require to effectively evaluate how campaigns run in a not-for-profit organization, as well as learn how to integrate education, advocacy, awareness, and research to empower those affected by PH. It is a pleasure to be apart of such a hard working and dedicated team.”

Rahul Bhundhoo has joined our team as the temporary Communications Assistant and Francophone Outreach Coordinator: “I am a student at the University of Waterloo and am currently completing a Bachelor’s of Science in Health Studies. I am passionate about health care and how health-related information is communicated. Ever since I started my academic career, I have always known that I wanted to end up in a field where I was able to, indirectly or directly, help others. Although medical school was an option, I wanted to look at health from a broader perspective. This is how I became interested in effective messaging and cross-cultural communication in health. My goal is to provide access to accurate, up-to-date, and easy-to-understand health information to everyone, while taking into account language and cultural backgrounds. At PHA Canada, I am responsible for assisting in the development of a francophone communications strategy and tasked with the English-to-French translation of web content and educational resources. Since PH is not a well-known disease, it brings me joy to know that communities have access to information that they can use to educate themselves and others. I am happy to contribute to raising awareness because it can save lives.”
PHA Canada Seed Grants
PHA Canada has a limited amount of money available to support member-driven events such as support group meetings, special community gatherings, educational forums, and awareness and fundraising activities. Our seed grants are designed to help our members organize events that will benefit the PH community. If you’re planning an awareness event for November, are preparing a special support group gathering, or have big ideas for projects to come, we invite you to fill out a PHA Canada Seed Grant Request form. To discuss eligible projects or to obtain more information, please contact Jamie Myrah at jmyrah@phacanada.ca or 1-877-774-2226 x 101. We look forward to receiving your applications in time for November Awareness Month! 




Successful Run/Walk for PH Research – Congratulations to Renae for raising a whooping $11,375 for PHA Canada on June 25, 2016 for their 3rd annual Run/Walk for PH Research in Ajax!
Blood test shows promise in gauging severity of pulmonary arterial hypertension – Johns Hopkins Medicine researchers report that rising blood levels of a protein called hematoma derived growth factor (HDGF) are linked to the increasing severity of pulmonary arterial hypertension.
PAH Patient Survival May Be Predicted by Plasma Levels of Two Lipid Metabolites – Researchers from Tufts Medical Center in Boston identified two new biomarkers that may help predict survival in patients with pulmonary arterial hypertension (PAH).
Screening Rheumatoid Arthritis Patients for PAH May Be Relevant – Rheumatoid arthritis patients may be at greater risk for pulmonary arterial hypertension (PAH), and noninvasive screenings for PAH could identify the risk, offering a chance for treatment at early stages, according to recent findings from the University of Newcastle in Australia.
PAH Progression Linked to MicroRNA, Offering Potential Drug Target – Researchers at England’s University of Sheffield have identified a microRNA that, when lacking in patients, appears to be driving the progression of pulmonary arterial hypertension (PAH).
Augusta University researchers seek cause of high lung pressure – Researchers at Augusta University are zeroing in on the potential cause of a devastating lung disease, and a Georgia company could potentially help develop those findings into a new drug.
Butternut Squash and Fennel Soup
Contributed by: Kate McGoey-Smith, DipNrsg, MSW, RSW, FM, Volunteer Instructor with Fork Smart.

Here’s a delicious all-seasons no-salt-added recipe. The perfect excuse to head to the farmer’s market!
 
In an electric pressure cooker or stove top pressure cooker combine:

  • 1 chopped bulb of fennel
  • 1 small butternut squash, chopped
  • 1 chopped onion
  • 1 chopped apple (with skin on)
  • 2 cups chopped carrots
  • 2 ribs of celery, chopped
  • 1 medium sweet potato or 3 medium red-skin potatoes, chopped

 
Add water to ½ inch below maximum line (inside lining of stainless steel pot insert).
Stir in:

  • 2 tsp. Italian herb seasoning
  • 2 tsp. turmeric
  • 2 bay leaves

If using electric pressure cooker, press “manual button” and “minus” down from 30 to 12 minutes.
Keep vent off (middle position). Once done, vent, then remove bay leaves and carefully transfer to high-speed blender. Blend until smooth. Transfer back to cooker to keep warm.
 
Nutritional Information: this is a no-salt-added soup!

Check out “The Fork Smart Podcast”— weekly editions on Itunes or forksmart.org—a great place to hear helpful, evidence-based nutrition and ways to eat healthier!

The Pulse 

  
Community Events: click to read more!



July 15: GolPH for PH, Brampton, ON.
Join the GolPH for PH tournament, raising funds for PHA Canada.


August: Ascension du Mont-Washington, Mount-Washington, USA.
Member Geneviève Marcoux will be climbing Mount-Washington to raise funds for PHA Canada.



September 24-25: Congrès 2016 de la Fondation HTAPQ, Québec, QC. The Fondation HTAPQ will be holding its 2016 Symposium in Quebec City, September 24-25.
 
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

Louise Goulet, President of the Scleroderma Association of Saskatchewan, delivered over 100 Take Action PAH postcards to the Hon. Dustin Duncan, Saskatchewan Minister of Health, urging him to put words into action and provide immediate, publicly funded access to all Health Canada-approved PAH medications.
 
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. 
 


 
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