The Pulse: November 2014

November is PH Awareness Month!
We’ve waited all year long for PH Awareness Month, and it’s finally here! Our community has already achieved many awareness milestones, and the month has just begun.

Proclamations
PHA Canada’s Ambassadors have approached dozens of cities and towns, requesting them to officially proclaim November as PH awareness month. To date, they have achieved over 35 proclamations, from Penticton, BC to Saint Faustin, QC! It's not too late to request your own proclamation: visit phacanada.ca/proclamations for an easy template letter.

Community events
From lavish gala fundraisers to pub quiz nights, our members are holding a huge variety of events to raise awareness and funds for PH. Check out the many events in the sidebar of this emailer, or get resources to host your own!

Personal Fundraising pages
Your personal PH story is your most powerful fundraising tool, and many patients and caregivers are using their stories to fundraise for PH research through PHA Canada. Create or revamp your personal fundraising page today at phacanada.ca/personalpages!

Our corporate partner Actelion Pharmaceuticals will be generously MATCHING all donations received the month of November up to a maximum of $5000!This means that you can double your donation by making it in November.

Conference Countdown: Scholarships now OPEN!
Can you believe that we are now only 6 months away from our National PH Conference on May 1-3 2015? Because we hope to bring as many patients and caregivers to our Conference as possible, PHA Canada offers scholarships for attendees. This year’s scholarship application period opens TODAY, November 3rd, and remains open until November 30th. Visit our brand new Conference website to get your scholarship application form today.

Mohamad Taha is a PhD student under the supervision of Dr. Duncan Stewart at the University of Ottawa. Mohamad will be contributing a quarterly Research Corner to our Pulse e-newsletter: here is his first column!

In this corner, you will find the latest advancements in the field of PAH therapeutics. But before we get into that, it would be useful to start with information on how new therapies are tested before getting to the patients.The process starts with a screen of different chemicals. In PAH, we know that cells in blood vessels in the lungs are hyper-proliferative, meaning that they multiply too quickly, very similarly to a cancerous cell. Thus, screening usually focuses on drugs that slow down this process. In other cases, scientists rely on previous knowledge regarding a drug to generate a hypothesis of how that drug might function. Testing the drug in vitro (on cells grown in a lab) is usually crucial to understand its function and how it works, and sets the stage for the following steps of animal testing. If positive results are found in animal tests, scientists then start thinking about testing in humans. Read more.

PHA Canada at Medical Conferences
As part of our Early Diagnosis focus and November Awareness month, PHA Canada is currently exhibiting at the St. Paul’s Hospital Continuing Medical Education Conference for Primary Care Physicians (Nov 3-6) and at Granville Island (Nov 1-4) in Vancouver, BC. If you are interested in visiting or volunteering at our exhibits, please email Angie at aknott@phacanada.ca. We also exhibited at the Canadian Cardiovascular Conference on October 25-28, which provided an amazing opportunity to educate cardiologists, cardiac technicians, students and cardiac nurses about PH.

Sometimes it’s PH: Early Diagnosis website is up!
Statistics from PHA Canada’s Burden of Illness survey show that on average, it still takes 2 or more years for a correct PH diagnosis. PHA Canada’s strategic plan identifies a need to decrease this delay. To achieve this goal, we’re aiming to educate medical professionals about PH and asking them to consider PH as part of their diagnosis. Part of our Early Diagnosis campaign includes a website with information and resource materials on Early Diagnosis. Check out our newly launched site today at phacanada.ca/sometimesitsPH

Introducing our Ambassadors: Stephanie
We launched our Ambassador program in September, bringing together a passionate group of PH advocates from all walks of life. This month, we’re introducing PHA Canada Ambassador Stephanie from Edmonton. In her own words:

“My name is Stephanie Ricci and I am mom to Sophia, who turned 6 in August. Sophia was diagnosed at 8 months old with PH, and our lives forever changed. The first year was a roller coaster of emotions, physical changes, and adjustments for everyone. Because of our experience, I am passionate about supporting others in the PH world. I have a vested interest in pediatric PH and want to make a difference for the children and their families battling this illness. I am excited to be in a position with PHA Canada with other Ambassadors, and I am certain that working together, we can spread awareness and continue to PHight this horrible disease.”

Navigating caregiving is a strain on Canadians
81% of Canadians find the healthcare system too complicated, and 78% agree that navigating it is a challenge. With more than 8 million Canadians providing care to a loved one, the scope of this challenge is immense.

New PAH Research Highlights Importance of Exercise
New PAH research suggests that patients’ muscles are affected by the disease at the cellular level, and that any measure of exercise can have a palpably positive impact on health and well being.

Freeze-dried plants may treat pulmonary hypertension
A drug grown in plant leaves and then freeze dried and enclosed in capsules might offer a treatment for PH.

The Impact of PH on Canadians
When holding an awareness event or advocating to your local MP, it’s essential to have information about how PH affects Canadians. PHA Canada recently produced a summary report of last year’s Burden of Illness Survey. This booklet contains statistics on exactly how PH impacts both patients and caregivers, and is a perfect resource for educating others. Order free copies of The Impact of PH on Canadians from us today by emailing swong@phacanada.ca.

Low fat baked curried fries
Kate McGoey-Smith is a community member who has experienced fabulous health effects since changing her diet. Kate is also a certified Food for Life Instructor through the Physicians Committee for Responsible Medicine and is offering a course in Calgary. Learn more in our events section or by visiting www.forksmart.org.

Ingredients:
- 5lb bag of yellow skinned potatoes – washed, peeled and sliced into fries
- 2-3 Tbsp Chili Powder, Garam Masala; Ground Coriander; Tumeric; Onion Powder; Fresh Curry Leaves

Steps:
Prepare a large pot of boiling water. Boil raw fries until potatoes are tender. Then place on parchment paper lined baking sheet and sprinkle with seasonings. Bake at 425F for 25 mins, then turn and cook another 15-20 mins until golden brown and crispy on the outside and tender on the inside.