PHA Canada eNewsletter: Vol.6 #1 Jan. 2016 

Happy New Year!
We hope that you enjoyed restful holidays filled with family fun, love and joy. It’s the start of a new year and we are excited to take on new projects, set up new programs, and continue to work towards achieving our vision of a better life for all Canadians affected by PH! For the PH community, every new year brings reasons to be hopeful: our network grows, our community gets stronger, more research is undertaken, new treatments are made available, patients attain better quality of life, and PH awareness is on the rise. We have lots to look forward to in 2016 and will keep you updated on what’s happening in our community!

Paroian Family PHA Canada PH Research Scholarship

Since the summer of 2014, PHA Canada has been gathering funds for PH research and, at our 2015 National PH Conference in Montreal, we announced that we would soon be ready to award our very first research scholarship. Today we are very happy to announce that, thanks to the tremendous support of our community, we will be awarding TWO full research scholarships to up-and-coming Canadian PH researchers. In recent months, members of our community have spent incredible amounts of energy organizing and contributing to fundraisers to benefit our research scholarship fund. Thanks to the joint efforts of our supporters and to the Paroian Family’s generous contribution, we have raised enough to support two $10,000 research scholarships! Our Medical Advisory Committee has reviewed the applications we received in the fall and has selected two research projects that will be supported by these scholarships. We will publish descriptions of these projects in the February Pulse e-newsletter. For more information about the Paroian Family PHA Canada PH Research Scholarship, please visit our website.

14th Pulmonary Hypertension Symposium Hosted by the BC Pulmonary Hypertension Society
The BC Pulmonary Hypertension Society is hosting its 14th Pulmonary Hypertension Symposium February 26th and 27th at the Pacific Gateway Hotel, Richmond, BC. The symposium brings together patients, caregivers, medical professionals and other PHriends of the PH community. For more information on the event and to find out how to register, please visit the event page or download the event flyer.

Introducing our new Executive Director
PHA Canada welcomes at its helm Jamie Myrah, who will take office as Executive Director January 25th. We are happy to see Jamie join our team and contribute her experience to help further our mission. Here’s a message from Jamie addressed to our community:

Hello Friends,
I am so pleased to be introducing myself to you today. First, I want to take this opportunity to thank the Board of Directors for their very warm welcome to PHA Canada. It has been a pleasure to begin to get to know your Directors; throughout the hiring process I have been continually impressed by their professionalism and maturity as a Board and am very much looking forward to us working together on your behalf. I thrive on collaborating with other passionate change makers and I’m already inspired by the abundance of positive energy that exists in Canada’s PH community. I appreciate the trust that your Board of Directors has placed in me and know the learning curve that awaits me as I get to know you, your challenges, and your aspirations.

Thankfully I come prepared! I bring with me almost 20 years experience in the community-based health sector as a community developer, health educator, advocate, and leader, primarily in the fields of HIV and chronic disease prevention. One of my proudest moments was in 2011 when the Canadian Bar Association, BC Branch awarded me an entrance scholarship to the University of Victoria’s Faculty of Law in recognition of my contributions to the HIV movement and the legal community. The same values that drew me to HIV activism in my youth—values of community, compassion, and justice—continue to drive my commitment to fighting health inequities and ensuring we all have fair access to the care and support we deserve.

After leaving law school to return to my community-building roots, I was fortunate enough to be introduced to the rare disease sector. Most recently I was Executive Director of the Canadian MPS Society, a grassroots association of families whose children have been born with ultra-rare genetic lysosomal disorders that cause significant disability and death. I loved getting to know this small but fierce community and am grateful for all I learned during my time with the MPS Society. There is something truly special about rare disease communities and I consider it a privilege to be able to continue my journey as an ally and advocate of rare disease patients and their caregivers in an organization as dynamic and ambitious as PHA Canada.

Best Regards,

We are THRILLED to launch our brand new site! This new site constitutes the most comprehensive resource on PH we have produced! The site presents current information on PH in simple and clear terms, including ideas about the disease itself, the scientific understanding of PH, the steps in the diagnosis of PH, and the treatment of PH. Whether you are new to PH or have been living with the disease for many years, this your one-stop to get answers to PH-related questions!

Many thanks to Dr. Sanjay Mehta, London Health Sciences Centre–Victoria Hospital and Mrs. Linda Arsenault, Millennium Medical Communications, who built the first iteration of this site and helped us update and transfer its contents. We also extend our thanks to members of our Medical Advisory Committee who reviewed accuracy of contents.

The role of the prostacyclin pathway in PAH and the drugs targeting this pathway
Contributed by: Mohamad Taha, PH Researcher

In this issue, we will address some questions regarding PH therapy, more specifically, the role of the prostacyclin pathway in PAH and the drugs targeting this pathway.    
­—What is the prostacyclin pathway composed of?
This pathway is one of the crucial pathways controlling blood vessel relaxation/ tightening (vasodilation/vasoconstriction) in the lungs. A crucial molecule called prostaglandin H2 is produced within our cells. This molecule can either be converted into prostacyclin, one of the crucial molecules leading to blood vessel relaxation (vasodilation), or thromboxane, one of the crucial molecules leading to blood vessel tightening (vasoconstriction). Prostacyclin is usually produced in endothelial cells—the cells lining the inside of blood vessels—but then is taken up by smooth muscle cells—the cells constituting the second layer of a blood vessel and that is important for vessel contraction. To function, prostacyclin has to bind to its receptor on the cell surface, leading to relaxation (vasodilation) of the blood vessels. Thromboxane has an opposing effect to prostacyclin on blood vessels and can lead to increased formation of blood clots. ... To continue reading, please click here.

Research Corner: The role of the prostacyclin pathway in PAH and the drugs targeting this pathway—In this issue, we will address some questions regarding PH therapy, more specifically, the role of the prostacyclin pathway in PAH and the drugs targeting this pathway.
New PAH Drug from Actelion Approved by FDA—Actelion Pharmaceuticals’ Uptravi is now approved for the treatment of adult patients with PAH.
Natalie Cole died of pulmonary hypertension leading to heart failure, family says—Natalie Cole's cause of death was idiopathic pulmonary arterial hypertension, which led to heart failure, the singer's family said.
Sildenafil’s Use in Children with Pulmonary Arterial Hypertension Still Topic of Controversy—Study explores reasons FDA and EMA drew opposing conclusions on drug's safety from same pediatric clinical trial results.
Epoch Times Article on PH Advocacy Day—Click here to read the Epoch Times article on the December 3rd PH Advocacy day (in Chinese).

Citrus Energy-Boosting Smoothie
Source: Best Health Magazine
It’s the time of the year when we all need a little extra boost of energy to fight winter blues and keep our immune system strong. Here’s a recipe that will put some rays of sunshine on your table and give you the energy to get through January!

  • 1 orange, peeled and chopped, seeds removed
  • 1 lemon, peeled and chopped, seeds removed
  • 4 spinach leaves
  • 2 carrots, peeled and chopped (or grated)
  • 1 1/2 cup (375 mL) almond milk
  • 1 peach, peeled and chopped
Directions: Blend all ingredients together.
Nutritional information: Serves two. Per serving: 143 calories, 4 g protein, 2 g fat (0 g saturated), 30 g carbohydrates, 6 g fibre, 0 mg cholesterol, 171 mg sodium.
The Pulse 

Community Events: click to read more!

Jan. 31: Brooklin Quiz Night, Brooklin, ON. Join Carolyn's monthly Quiz Night at the Brooklin Pub. $15 per person.

Feb. 26-27: BC PHS Pulmonary Hypertension Symposium, Richmond BC. BCPHS is hosting its 14th PH Symposium.

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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