PHA Canada eNewsletter: Vol.5 #8 Aug 2015
Sneak Peek: PH Counsellor service!
We are very excited to give you a sneak peek of our PH Counsellor service, which we will be officially launching in September. Many of you have repeatedly expressed the need for to address the emotional impacts of living with PH. We are very happy to be developing resources that will help support PH patients, caregivers, family members and friends with the emotional aspects of their PH journeys. We’ve brought Alyson Quinn, a seasoned counsellor and author of self-help books, on our team and will be launching a phone-in PH support line and self-healing resources on our website in September. Stay tuned!
GolPHing for PH in Brampton, ON
On July 13th, the very first ‘GolPH for PH’ golf tournament fundraiser took place in Brampton, ON! This fundraiser was organized by Patrick Paulin, whose daughter Brooke was diagnosed with PH in March 2014, and was held at Lionhead Golf and Country Club in Brampton, Ontario. The Paulin family was very successful in gathering sponsorships and support for this exciting fundraiser. In Patrick’s own words:
“Because it was the first year we’d organized something, our goal was to raise $10,000. That goal was based on having 120 golfers. We ended up having 73 golfers and raised just under $8,400. We were very pleased with that, as it was our first event!”
We were thrilled to see the GolPH for PH event go off so smoothly. Congratulations to the Paulin family and supporters for such a successful first fundraiser! A full report of the GolPH for PH event will appear in the September issue of Connections magazine.
New PH therapies, pathways and clinical trials
Contributed by Mohamad Taha, a PhD student under the supervision of Dr. Duncan Stewart at the University of Ottawa.
In this issue of Research Corner, some of the novel PH therapies under development are discussed. I will also explain the different target pathways for PH treatments, and different research stages.
Currently approved PH treatments aim to increase levels of natural lung vasodilation, leading to opening (dilation) of blood vessels. Vasodilators work directly on the walls of your arteries, preventing the muscles from tightening and the walls from narrowing. PH drugs stimulate vasodilators (the prostacyclin or nitric oxide pathways) or inhibit vasoconstrictors (the endothelin pathway). Further information about already approved therapies is available on PHA Canada's website. However, as we understand more about the mechanisms behind pulmonary hypertension, we look at new targets and new pathways that may provide us with more treatment options.
Novel targets/pathways for therapies currently under investigation:
(1) Receptor tyrosine kinase (RTK) inhibitors: Drugs targeting this pathway aim to inhibit the binding of “growth factors”, the factors that signal the cell to divide and multiply, from binding the surface of the cells (the receptors). We are learning that in PAH, the normal cell cycle process is disrupted and cells divide more frequently than they should. READ MORE.
New team members on our staff and board
PHA Canada is pleased two introduce one new member to our staff, and one new Director on our Board. Patricia Klassen will be replacing Shirley Wong, who is retiring after 4.5 years as PHA Canada’s Administrative Assistant, and Renée Levaque who has joined PHA Canada as a member of our Board.
Patricia Klassen - Patricia comes from a customer care, reception and administrative background. She has extensive volunteer experience with nonprofit organizations and starting volunteering at the tender age of 7. The cause of PH is close to Patricia's heart, as she has a 2 year old great-nephew and her 82 year old father who are both patients of the disease. She looks forward to contributing her skills to PHA Canada's mission.
Renée Levaque - Over the years, Renée has always been involved in volunteer work, particularly with youth. She lives in Québec City and is the mother of two daughters and one grandson. She has an environmental sciences background and a master’s degree in epidemiology, and has been working in public health for the last 18 years. Soon to be retired, Renée wishes to continue her involvement in community services. Knowing that, friends invited her to the Montreal 2015 PHA Conference where she was amazed by the positive energy of patients, caregivers and professionals. She is excited to be a part of the PHA Canada Board of Directors.
We are happy to have these dedicated individuals on our team and excited to see what we can accomplish together.
Stem cell therapy shows promise in small clinical trial for rare lung disease - Canadian researchers have published promising results of the first clinical trial in the world of a genetically-enhanced stem cell therapy for PAH.
New Sound Wave-Based Method for Assessing Heart Function in PAH Shows Promise in New Study - A new imaging method that uses sound waves could help in assessing heart damage in people with PAH.
Faulty arginine metabolism contributes to cardiopulmonary dysfunction in thalassemia - A research study of patients with thalassemia found that low bioavailability of the amino acid arginine may contribute to PH.
Massachusetts General Team Generates Therapeutic Nitric Oxide from Air with an Electric Spark -Treatment with inhaled nitric oxide (NO) has proven to be life saving in newborns, children and adults with several dangerous conditions, including PH.
No Ronald McDonald House for sick adults - There is no Ronald McDonald House for sick adults who must travel, and live, in Toronto to receive their medical care.
Limited edition periwinkle lungs t-shirts!
At our National PH Conference, people were enthralled with the beautiful periwinkle t-shirts produced by PH patient Nicole Dempsey’s family. The t-shirt features lung artwork designed by 7 year old PH caregiver Carys Dempsey. Due to popular demand, these limited edition t-shirts are now ON SALE in the PHA Canada store. Buy yours today!
PH purple blueberry popsicles!
1 cup plain yogurt (or your favourite non-dairy alternative!*)
1 cup fresh or frozen blueberries
1 tablespoon honey
Popsicle mould (available at IKEA and other stores)
Put yogurt, fruit (slightly thawed if using frozen) and honey into a blender and blend to desired consistency. Pour mixture into moulds, freeze and enjoy!
*Try coconut milk, soft tofu or almond milk!
Per Serving (1 5oz popsicle): 80 calories (20 from fat), 2g total fat, 1.5g saturated fat, 10mg cholesterol, 30mg sodium, 15g carbohydrate (1g dietary fiber, 13g sugar), 2g protein
Community Events: click to read more!
Sep 05: 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; and learn from others about how to get involved.
Sep 07: Picnic event: Patient support group
PULMONARY HYPERTENSION CLINIC PICNIC EVENT – PATIENT SUPPORT GROUP. Weather permitting, the clinic patients will be holding a picnic on Labor Day – September 7th, 2015 at 11:30 to 14:00 at the hospital.
Nov 07: Trivia Fun Pub and Grub Night
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!