PHA Canada eNewsletter: Vol.5 #9 Sept 2015
Coming soon: Awareness Month!
While we’re sad that summer is over, Awareness Month is just
around the corner, and we at PHA Canada have big plans. We
have the whole month of November to make an impact for people
living with PH: here are some ways you can get involved this
The Lend a Hand campaign 2.0
Since 2011, PHA Canada has held the Lend a Hand campaign,
where patients and supporters collect signed handprints to raise
awareness of PH. This year, we also wanted to use this campaign
as a tool to drive PH research. This November, our Lend a Hand
campaign will allow people the option of donating a dollar amount
for every handprint they collect. In addition, our supporter Actelion has promised to MATCH all Lend a Hand donations collected in November, to a maximum of $10,000! Half of the funds raised through this campaign will go directly towards PH research. To order your FREE Lend a Hand kit or learn more, visit:
Growing our web of support
The larger PHA Canada’s web of support is, the more power
we have to change the lives of PH patients and caregivers.
When more individuals demonstrate that they care about PH, the
government and media are more likely to respond to our requests.
You don’t have to have PH to be affected by it: our community is
made up of those who have been touched by PH as sisters, friends, grandparents, co-workers, in-laws, children, medical professionals, researchers, and many others. We need these PH supporters on our side.
For the month of November, we’re offering a FREE category of
membership for PH supporters. Please invite everyone in your web
of support to join ours too. Visit phacanada.ca/phsupporter to
activate FREE memberships for all the people in your network!
PH Counsellor Service LAUNCH!
PH can be an isolating disease, and those affected can experience
feelings of depression, stress and hopelessness. While our community receives physical health care from our excellent PH-treating specialists, many have expressed the need to recognize and address the emotional impacts of the disease. We are happy to announce that Alyson Quinn, a seasoned counsellor and author of self-help books, has joined our team as PH Counsellor.
PH Support Line
Alyson will be offering brief psychosocial support over the phone to
the members of our community (patients, caregivers, friends and
family) who are faced with a particular PH-related emotional
challenge. Our free and confidential PH support line is now open.
Call 1-800-PHA-0159 (1-800-472-0159) to speak with Alyson on Mondays:
PST: 12–2:30 p.m.
MST: 1–3:30 p.m.
CST: 2-4:30 p.m.
EST: 3-5:30 p.m.
AST: 4-6:30 p.m.
Learn more about the PH counsellor service at phacanada.ca/phcounsellor.
Reflections from Alyson
Every month in the Pulse, Alyson will address emotional issues
that may concern you as a member of the PH community. You
can submit a topic of interest that you would like to see her
discuss by filling out our online form here.
Paroian Family PHA Canada PH Research Award
PH research is important because patients and caregivers
everywhere want a cure for this disease. Since summer 2014,
PHA Canada has been gathering funds for PH research. Half of
this funding has come directly from community fundraisers and
events, which shows just how meaningful PH research is to our
members. At our 2015 National PH Conference in Montreal, we
announced that we would soon be ready to award our very first
research scholarship, which will support new PH researchers.
This special scholarship, titled the Paroian Family PHA Canada PH Research Award, will be given to Ph.D students and fellows working in PH. We have now prepared all of the application items for the Paroian Family PHA Canada PH Research Award. We are pleased to announce that the competition for the award is now OPEN, and we are inviting researchers across Canada to apply. The application information and forms can be found on our website at phacanada.ca/research.
Pulmonary hypertension: A growing problem in US children
Fast Facts: Study reveals pediatric pulmonary hypertension hospitalizations on the rise, resulting in skyrocketing costs. Findings uncover need to initiate a national registry to track individual patients over time.
Meta-analysis: Exercise training benefits patients with pulmonary hypertension - Exercise training is safe and effective for patients with pulmonary hypertension, according to a meta-analysis published in Circulation: Heart Failure.
Researchers identify new drug target for serious heart and lung condition - A gene has been identified that sheds new light on a potentially fatal heart and lung condition and could lead to a new treatment. The findings indicate that a new treatment for PAH could be produced by suppressing this gene.
Research Corner: New PH therapies, pathways and clinical trials
In this issue of the Research Corner, some of the novel PH therapies under development are discussed.
Back to school time brings worries both for little PHighters AND for their parents. Our Pediatric committee has created an excellent PH School Package, which can 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. The committee has compiled easy-to-use checklists, template letters and drug info sheets: find them at phacanada.ca/pediatrics.
PH Counsellor Webinars
Our PH Counsellor has been busy developing self-healing material designed to specifically address the emotional challenges that come with living with PH. These webinars provide concrete tools and strategies to help you take charge of your emotional healing process. View our first 3 webinars here.
Apple cinnamon energy bites
Healthy energy bites that taste just like apple pie!
- 1 cup dried apples (not freeze dried)
- ½ cup medjool dates, pits removed
- ½ cup unsalted dry roasted almonds
- ½ cup old fashioned oats
- 1 T. maple syrup
- 1 t. cinnamon
- ⅛ t. allspice
- 2 T. water, more if needed
Soak the dates in hot water for 10 minutes. Add all of the ingredients to a food processor or high speed blender and blend until the mixture turns into a paste or dough like consistency.
Scoop out heaping tablespoons of the mixture and roll into balls.
Store the energy bites in an airtight container in the refrigerator or freezer.
Nutritional information per serving: 52 calories, 9g carbs, 2g fat, 1g protein, 4mg sodium, 7g sugar
Community Events: click to read more!
Sep 12 - Toronto PH Support Group Meeting
The Toronto PH support group provide a place where patients, family members and caregivers can share their experiences, learn about PH, treatments and how others have adjusted their lifestyles around PH.
Oct 02 - Advances in PH 2015
The Westin Prince, Toronto, ON
Advances in Pulmonary Hypertension is back to a 1-day program. Help us in welcoming our special guest speakers at this year's Advances in PH!
Nov 07: Trivia Fun Pub and Grub Night
Pic-a-Deli Restaurant, Oakville, ON
The Toronto Chapter presents Trivia, Fun, Pub & Grub Night on Saturday November 7, 2015 starting at 5:00pm at Pic-a-Deli Restaurant (670 Fourth Line, Oakville, ON L6L 5B4) Compete with other teams by testing your knowledge on current events!