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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #7 July-August 2016 
PHA Canada Alberta Forum
Attention Alberta residents, online registration for the PHA Canada Alberta Forum is now open! Registration is free, but attendees must register to receive lunch at the event. 
Date: October 1st, 2016
Time: 10 a.m. to 4 p.m.
Location: Radisson Hotel, Red Deer
 
Visit www.phacanada.ca/albertaforum to learn more and register.
 
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. The Alberta Forum is part of our commitment to making sure that such events are made available to as many people–in as much of the county–as possible. The convenient location of Red Deer has been chosen to facilitate access from both Edmonton and Calgary. Additionally, limited financial assistance will be available to help qualified individuals from Alberta attend. For more information about receiving assistance, please contact our Executive Director, Jamie Myrah, at jmyrah@phacanada.ca or 1-877-774-2226 x 101.
 
The Forum’s program is currently being put together by a great provincial steering committee consisting of Lynn-Marie Cox, Marcin Gozdzik, Gail Nicholson, Cheryl Salvador, Stephanie Ricci, and Heather Zloty. Attendees can look forward to learning more about the importance of strong social support systems, how to cook low sodium meals, and tips and tricks from experienced patients and caregivers for living well with PH. There will also be dedicated speakers on pediatric issues, as well as opportunities to reunite with old friends while making new connections. Watch the event website for upcoming details on speakers and the Forum agenda!


GolPH for PH (July 15th, Brampton, ON)

For the second year in a row, the Paulin Family organized a golf tournament in support of PHA Canada’s programs and services. Green may usually be a golfer’s favourite colour, but thanks to the efforts of the Paulin Family, periwinkle was top of mind for the 70 event participants at the Lionhead Golf and Country Club in Brampton. With over $18,000 raised, we can say that this year’s tournament was definitely a hole in one! We are amazed at the success of this event and grateful for Pat, Joan, and Brooke Paulin for their passion and their commitment to helping us achieve a better life for all Canadians affected by PH.
 
PHA Canada thanks everyone who made this year’s GolPH for PH possible, from the golfers, donors, and volunteers to the very generous event sponsors: Actelion Pharmaceuticals Canada, Bayer Inc., Unither Biotech Inc., Starbucks, Mimecast, Erco Worldwide, and Weber BBQ. 



Canada Cares National Caregiver Awards
Caregivers and medical professionals are essential to PH patients’ wellbeing by providing support in countless ways. We invite you to acknowledge the contributions of PH caregivers and medical professionals by nominating your support person, PH doctor, or PH nurse for a Canada Cares National Caregiver Award. Your caregiver could win a $10,000 One Wish Award! Nominations are accepted until September 30th, 2016. To learn more and submit a nomination, click here

Vote for your Favourite PH Awareness Flag
Competition is now open! Cast your vote to determine which flag design will become PHA Canada’s official PH Awareness flag. The winning design will be produced in time for November PH Awareness Month, for use by members at awareness and fundraising events or to hoist at their local City Hall.


Voting will be open until Sunday, September 18th. There’s no limit on how many times you can vote! Click here to vote for your favourite design. The winning design will be announced on our website and Facebook page on Monday, September 19th, 2016.
 
If you’re planning an event for November Awareness Month and want to add a touch of periwinkle power with an official PHA Canada PH Awareness Flag, please contact our Communications Associate, Mariane Bourcheix-Laporte, at mblaporte@phacanada.ca. Act fast to claim your flag, as only a limited number will be available.
 
We can’t wait to see our colours hoisted across the country in November!


Emotional Resource: Handbook for PH Patients
We have made new sections of the Emotional Resource: Handbook for PH Patients available on our website. Written by PH Counselor Alyson Quinn, this handbook provides tools and ideas to learn about emotional wellness and self-healing. It has been separated in sections looking at particular emotions that PH patients may experience.
New sections include:
Section 5: Loneliness and PH
Section 6: Sadness and PH
Section 7: Self-Pity, Entitlement,
and PH
Section 8: Compassion for Self and Others and PH
Section 9: Patience and PH
Section 10: Invalidation and PH
Section 11: Self-Care and PH
Section 12: Courage and PH
To access this resource, please click here.

PH School Package
Back to school time brings worries both for little PHighters and their parents. Our PH School Package can help alleviate some of the anxiety that a new school year brings by helping you to inform your school about your child's needs and condition. We’ve compiled easy-to-use checklists, template letters and drug info sheets: find them at phacanada.ca/pediatrics


PAH-Associated Conditions: Systemic Sclerosis and HIV
Contributed by Mohamad Taha, PH Researcher

In this issue of the Research Corner, we will address some questions regarding medical conditions that can be associated with pulmonary arterial hypertension (PAH), with a focus on systemic sclerosis and HIV associated PAH.    
Can other diseases lead to development of PAH?
Sadly, yes. According to the most recent classification, PAH can appear associated to several disorders:
  • Connective tissue diseases - diseases affecting connective tissue, mainly joints and skin such as scleroderma and lupus .
  • HIV infection - infectious virus that leads to immunodeficiency
  • Portal hypertension - increased pressure in the portal venous system that comes from the stomach, intestine, spleen and pancreas(i.e. abdominal blood supply from the intestine to the liver), also known as portopulmonary hypertension (POPH)
  • Congenital heart diseases - problems with the heart anatomy/structure present at birth
  • Schistosomiasis infection - a disease caused by a parasitic worm common in Africa, Asia, and South America
To continue reading, please click here.




Bayer and the Canadian Vascular Network (CVN) Announce the 2016 Research Fellowship Awards - The Canadian Vascular Network (CVN) and Bayer are pleased to announce that Dr. Jason Weatherald (University of Calgary) and Dr. Don Thiwanka Dilshan Wijeratne (Queen's University) are the recipients of a partnered research fellowship providing recognition and salary support to outstanding Canadian physician-researchers with an academic interest in Pulmonary Hypertension (PH).
Advances in PH Journal: Refractory Pulmonary Hypertension, 2016 (Vol 15, No 1) - Read the latest edition of Advances in PH Journal: Refractory Pulmonary Hypertension, 2016 (Vol 15, No 1)
Local woman competing in three events at Transplant Games - Maureen Lalonde will be competing in her first ever Transplant Games in Toronto next week. Lalonde is not only happy to be taking part - she is happy to be alive.
Orenitram Tablets Again Found to Be Viable Treatment Option for Stable PAH Patients - Further evidence that the oral drug Orenitram (treprostinil) might be a viable option to Remodulin, the injected version of the drug, for lower risk pulmonary arterial hypertension (PAH) patients was recently published by researchers at Washington University in St. Louis, Missouri.
Successful Golf for Pulmonary Hypertension - The second annual GolPH for PH took place on Friday July 17, 2016 at the Lionhead Golf Club & Conference Centre in Brampton ON.
Mifcare Announces Positive Preclinical Results with MFC1040 in Pulmonary Arterial Hypertension - Mifcare, a privately held biotechnology company developing breakthrough anti-inflammatory therapeutics announced today positive preclinical results for MFC1040 in pulmonary arterial hypertension (PAH) through collaboration with Inserm.

Cranberry and Cilantro Quinoa Salad
Source: Allrecipes.com

This easy-to-make salad is perfect for lunch on a hot day or as a BBQ side dish.


Ingredients:
  •       1 1/2 cups water 

  •       1 cup uncooked quinoa, rinsed 

  •       1/4 cup red bell pepper, chopped 

  •       1/4 cup yellow bell pepper, chopped 

  •       1 small red onion, finely chopped 

  •       1 1/2 teaspoons curry powder 

  •       1/4 cup chopped fresh cilantro 

  •       1 lime, juiced 

  •       1/4 cup toasted sliced almonds 

  •       1/2 cup minced carrots 

  •       1/2 cup dried cranberries 
                       

  •       salt and ground black pepper to taste
Directions
  • Pour the water into a saucepan and cover with a lid. Bring to a boil over high heat, then pour in the quinoa, recover, and continue to simmer over low heat until the water has been absorbed, 15 to 20 minutes. Scrape into a mixing bowl and chill in the refrigerator until cold.
  • Once cold, stir in the red bell pepper, yellow bell pepper, red onion, curry powder, cilantro, lime juice, sliced almonds, carrots, and cranberries. Season to taste with salt and pepper. Chill before serving.
Nutritional information: Per serving (recipe makes 6) 176 kcal; 3.9g fat; 31.6g carbs; 5.4g protein; 0g cholesterol; 13mg sodium.
 
The Pulse 

  
Community Events: click to read more!

September 3: Toronto PH Support Group Meeting, North York, ON. The Toronto PH Support Group will be holding a meeting.

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.

October 1st: PHA Canada Alberta PH Forum, Red Deer, AB. Attend this free educational and networking event. 
 
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


PHighter and double lung transplant recipient, Braden Gendron, participated in the 2016 Transplant Games in Toronto.
 
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. 
 
 
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, preparing a special support group gathering, or have big ideas for projects to come, we invite you to fill out a Seed Grant Request Form. To discuss your ideas or 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
 
 
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