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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.7 #3 March 2017 

Call for Applications: Mohammed Family PH Research Scholarship
We are delighted to announce that the call for applications for PHA Canada’s newest research scholarship—the Mohammed Family PH Research Scholarship—is now open! Thanks to the incredible support of the Mohammed Family, who will be holding their Fourth Annual Run/Walk for PH Research fundraiser on June 10th (Ajax, Ontario), we are able to offer a scholarship of up to $10,000 in support of PH research in Canada.
 
PHA Canada’s Mohammed Family PH Research Scholarship provides a financial stipend to an outstanding trainee in support of their research into pulmonary hypertension. PHA Canada invites post-secondary students (undergraduate, graduate, or post-graduate/post-doctoral) involved in research with the potential to meaningfully contribute to the understanding and treatment of PH to submit an application by 5:00 pm PST on May 05, 2017.
 
Eligibility requirements:
The candidate must:
  • Be a Canadian citizen or have permanent resident status;
  • Be enrolled in undergraduate, graduate, or post-graduate/post-doctoral studies in a relevant field (i.e. health sciences, medicine, psychology, nursing, etc.) at an educational or healthcare institution in Canada;
  • Be currently registered and in good standing in their program of study;
  • Identify a mentor and/or laboratory with appropriate research expertise; and
  • Have demonstrated academic excellence and show promise of outstanding achievement in research training.
The proposed project:
• Must meaningfully contribute to one or more of the following areas:
  • Epidemiology of PH in Canada
  • Clinical aspects of PH
  • Mechanisms of PH
  • Treatment of PH
  • Social and/or economic implications of PH
• May or may not involve human subjects
 
Download Scholarship Guidelines 
Download Application Form 
For more information on PHA Canada’s currently funded PH research scholarships, please visit www.phacanada.ca/research

10- and 20-Mile March in Honour of Everleigh Pierce (Mosa Township, ON)
 
On March 4th, members of the Upper Thames Military Re-enactment Society (UTMRS) put on their walking boots and tall hats to walk 20 miles in honour of PHighter Everleigh Pierce. Organized annually by the UTMRS, this event commemorates the 20-mile march conducted by the Royal Scots and 89th Light Companies on March 4, 1814, from Delaware to Battle Hill, Ontario, at the Battle of Longwoods. For the third consecutive year, UTMRS members raised funds for PHA Canada through this event. Thank you to the marchers who braved the cold to support our cause!
 
PH Awareness Dinner (Russell, ON)
 
Over 240 supporters from the Ottawa region enjoyed a delicious dinner in Russell on April 1st in support of the local PH community. Organized by a passionate group of residents, this benefit dinner and silent auction raised over $31,000 in support of Dr. Duncan Stewart’s stem cell research at the Ottawa PH Clinic, PHA Canada, and local patients! This event was not only a PHantastic fundraiser; it also served as a great occasion to raise PH awareness. Attendees learned of the impacts of the disease thanks to moving speeches from PHA Canada Board Member Harry Kingston and transplant recipient Marion Feeley. Drs. Lisa Mielniczuk and Duncan Stewart from the Ottawa PH Clinic also gave insightful presentations on current developments in PH treatment and research. What a Phabulous demonstration of periwinkle power! Thank you to all the supporters, volunteers, and donors who made this PH Awareness Dinner a great success! 

Summer Events
Bring on the sunshine by registering for summer PH community events! Supporters in Ontario are busy organizing two of our biggest fundraisers of the year: the Annual Run/Walk for PH Research (June 10th, Ajax) and the GolPH for PH Tournament (July 13th, Brampton). If you live in the Toronto area, don’t miss out on these well-attended events! They’re great opportunities to support PHA Canada and connect with other PHighters while having PHun in the sun!
 
To learn more about, register for, or donate to the Fourth Annual Run/Walk for PH Research, click here.
 
To learn more about, register for, or donate to the Third Annual GolpH for PH Tournament, click here

Get Ready for World PH Day 2017!






There are only a few weeks to go before World PH Day! On May 5th, help us raise PH awareness and celebrate PHighters worldwide! See below for ways you can get involved.

Help Us Paint Canada Purple
We are happy to announce that the following monuments will be illuminated in purple on May 5th as part of our Paint Canada Purple campaign: BC Place and Science World (Vancouver, BC); High Level Bridge (Edmonton, AB); Niagara Falls (Niagara, ON); and CN Tower, 3D Toronto Sign, and City Hall (Toronto, ON)! All of these illuminations have been secured by #PHAwareness powerhouse Loretta Chu! Thank you Loretta!
 
It’s not too late to send a request for your favourite landmark to shine bright on May 5th. Visit www.phacanada.ca/worldphday2017 for Paint Canada Purple resources, including a list of potential monuments in communities across the country. And don’t forget to let us know if your request was successful!

Organize a Special Event
May 5th is a great opportunity to raise awareness in your community with an educational activity or to celebrate periwinkle power with a special support group gathering. We have a limited amount of money available to support events that will benefit the PH community. We invite you to fill out a Seed Grant Request Form as soon as possible. To discuss your ideas or obtain more information, please contact Jamie Myrah at jmyrah@phacanada.ca or 1-877-774-2226 x101.

Order PH Educational Materials and Purchase PH Awareness Items
We have everything you need to make a big periwinkle splash for World PH Day! Visit our online store to order free educational materials and purchase PH awareness swag. PHA Canada’s new PH awareness flag is also is available for our members to use at events or hoist in their communities. Contact our Communications and Engagement Manager, Mariane Bourcheix-Laporte, at mblaporte@phacanada.ca to borrow one of our flags.
CORD Rare Disease Day 2017 Conference
The Canadian Organization for Rare Disorders held its annual Rare Disease Day Conference in Vancouver, March 30th-31st. Our Communications and Engagement Manager, Mariane Bourcheix-Laporte, attended the conference and will report back on the issues and ideas discussed at the event in next month’s edition of The Pulse.
 
Congratulations to Don Bell, father of PHA Canada Founding Board Member Darren Bell, who received an award at CORD’s Rare Disease Gala in recognition of his contribution to the Canadian rare disease community. In 2008, while serving as Member of Parliament for North Vancouver, Don introduced a private members motion in the House of Commons in support of PH and other rare disorders. Don’s work helped lead to the development of CORD’s “Canadian Rare Disease Strategy,” which was unveiled in 2015. We are very pleased to see his legacy recognized and his contribution honoured by CORD. 

Free Educational Materials
Providing access to up-to-date educational materials is one of the most important services we provide. We’ve now made it easier than ever to access and order free resources on our website. Visit www.phacanada.ca/educational-materials to access electronic versions or order print copies of our educational resources including:
  • PHA Canada Brochure
  • Information on pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), and chronic thromboembolic pulmonary hypertension (CTEPH)
  • Medikidz Explain PAH
  • Tip sheets for patients and caregivers
  • New to PH kits 

Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
Contributed by Mohamad Taha, PH Researcher
 
In this issue of Research Corner, we will address questions regarding chronic thromboembolic pulmonary hypertension (CTEPH), which is classified as Group IV pulmonary hypertension.
 
What is chronic thromboembolic pulmonary hypertension (CTEPH) and how does it develop?
Thromboembolism is defined as the obstruction of a blood vessel by a blood clot. If this obstruction happens in the brain, it can lead to a stroke; if it happens in the lungs, it leads to a pulmonary embolism (PE). PE can impede the blood flow in the lungs and lead to the formation of scar tissue in the pulmonary arteries, which in turn can lead to chronic thromboembolic pulmonary hypertension (CTEPH). If left untreated, CTEPH can lead to right heart failure, with a five-year survival rate of ~30%. To continue reading, click here





Special Stem Cells May Participate in Pulmonary Hypertension Lung Repair, Study Reports – A small group of stem cells may help repair the lungs of those with pulmonary hypertension (PH), chronic obstructive pulmonary disease (COPD), and other lung conditions, according to a study.
Reducing heart failure in pulmonary hypertension – An article published in Experimental Biology and Medicine identifies a new signaling pathway that promotes heart failure in pulmonary hypertension.
Actelion obtains “Epoprostenol Act” label extension for pediatric PAH patients in Japan – Actelion announced today that Japan's Ministry of Health, Labor and Welfare granted a label extension for dosage and administration for "Epoprostenol ACT" (0.5 mg and 1.5 mg) for the treatment of pediatric patients with pulmonary arterial hypertension (PAH).
Pulmonary Arterial Hypertension and Genetics: Interview With the Experts – Developments in genetics and genomics technology have begun to illuminate the mechanisms underlying the pathogenesis of PAH.
Statins May Boost Survival Chances Among Advanced Pulmonary Hypertension Patients, Study Finds – Pulmonary hypertension (PH) patients who take statins live longer than those who don’t — despite similar histories of hospitalization in both groups.
Blocking Factor in Lungs Could Be Way to Treat Clotting Form of Pulmonary Hypertension – The discovery of a molecular factor that triggers blood clots in lung arteries may explain why chronic thromboembolic pulmonary hypertension (CTEPH) often occurs in patients without traditional clotting risk factors, according to a study.
Evidence review supports pediatric use of PDE 5 inhibitors for pulmonary hypertension – A systematic review of the comparative effectiveness and safety of phosphodiesterase type 5 (PDE-5) inhibitors in pediatric patients with pulmonary hypertension demonstrates that scientific evidence supports the use of this class of medications in infants, neonates and children with pulmonary hypertension. 

Ratatouille
Contributed by: Kate McGoey-Smith, DipNrsg, MSW, RSW, FM, Certified Food for Life Instructor. Courtesy of Fork Smart.

This is a perfect ‘warm-up-my-insides’ recipe for blustery cold days. Ratatouille will fill your stomach with contentment and vitamins! Serve over brown rice or boiled baby potatoes for a satisfying meal-in-a-bowl.
Ingredients:

  • 1 large white sweet onion, diced
  • 1 large eggplant, cubed
  • 3 zucchinis, sliced
  • 1 large red peppers, diced in larger pieces
  • 796 ml can of salt-free diced tomatoes
  • 398 ml can of low sodium tomato sauce
  • 1 tbsp. chili powder
  • 2 tbsp. Italian seasoning
  • 6 cloves of garlic, minced
  • ½ cup nutritional yeast
Directions
  • In large pan, sauté onion until soft (use a small amount of water to keep from sticking and stir frequently).
  • Add all remaining ingredients and simmer for about 30 min. until soft. Stir occasionally.
Nutritional information: Per serving (recipe makes 8): 37 mg of salt.
The Pulse 

  
Community Events: click to read more!

PH Support Lunch, April. 6 (Oakville, ON). Join members of the Toronto PH community at an informal lunch gathering. 

London PH Support Group Meeting, Apr. 8 (London, ON). Join the London PH Support Group's monthly meeting, with special guest Janice Dinsmore Czechowsky, Trauma and Counseling Specialist.
 
Prevent and Reverse Heart Disease, Apr. 28 (Calgary, AB). Seminar on nutrition and heart disease by Dr. Caldwell Esselstyn Jr., M.D presented by Heart Calgary.

ATS International Conference 2017, May 19-24 (Washington, DC). International medical conference organized by the American Thoracic Society.

International CTEPH Conference 2017, June 9-10 (Leuven, Belgium).This international medical conference will cover various aspects of disease management, medical therapy, and interventional treatment.

PHA Canada Run/Walk for Research, June 10 (Ajax, ON). Fundraiser benefitting PHA Canada.

GolPH for PH, July 13 (Mississauga, ON). Fundraiser benefitting PHA Canada.

Eastern Regional PH Symposium, Oct. 13-14 (Toronto, ON). Mark your calendars for PHA Canada’s 2017 regional 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

Volunteers Grace Wickenheiser (featured) Juergen Buettemeyer, Wanda Robinson Saunders, and Maureen Lalonde for held a PH awareness table at Fanshawe College’s Annual Conference for Respiratory Therapist Students on Saturday April 1st.
 
 

Take Action PAH: Help Us Ensure Access to All Health Canada-Approved PAH Treatments

Since 2013, Health Canada has approved three new oral therapies for the treatment of PAH: Opsumit (macitentan), Adempas (riociguat), and Uptravi (selexipag). However, none of these treatments are accessible to PAH patients in Canada through public funding, with the exception of Opsumit, which is only funded in Quebec. We believe that all pulmonary arterial hypertension (PAH) patients – no matter their financial situation, province of residence, or private insurance coverage – should have access to optimal treatment. Because PAH is a highly individualized disease, specialized PAH physicians require the flexibility to prescribe any Health Canada-approved treatment they believe will result in the best possible short and long-term outcomes for their patients.
 
Visit www.takeactionpah.ca to learn more, send an email to your provincial representatives, and tweet at decision makers! All our tools have been updated, so if you’ve participated in this campaign in the past, we encourage you to #TakeActionPAH again.
 
We’re here to help! Contact us if you need additional information and support, particularly if you’re planning a meeting with your provincial representative (takeactionpah@phacanada.ca or 1-877-774-2226 x101).
 
We are also collecting stories from patients who are concerned about accessing optimal treatment for PAH. If you or a loved one living with PAH is currently unable to access Opsumit (macitentan), Adempas (riociguat), or Uptravi (selexipag), please contact our Executive Director, Jamie Myrah (jmyrah@phacanada.ca or 1-877-774-2226 x101) to share your story.
 
Save the Date: Eastern Regional PH Symposium!
 
Mark your calendars for our first Eastern Regional PH Symposium, which will take place October 13-14, 2017 at the Westin Prince Hotel in Toronto. Join us for Friday night for a special welcome reception and Saturday for a full day of educational sessions featuring medical experts and your PH peers. We are happy to announce that PHighters living in, or east, of Manitoba (within Canada) will be eligible to apply for travel scholarships – stay tuned for more details.
 
More information on this event will be announced in the coming months, including further details on scholarships, registration, volunteer opportunities, and program updates. Stay up-to-date by joining the event on Facebook or visiting our website regularly.
 
If you have any questions, are interested in getting involved, or have presentation topics to suggest, please contact our Executive Director, Jamie Myrah, at jmyrah@phacanada.ca

What Does PHA Canada Mean to You?
How has PHA Canada made a difference in your PH journey? What is the most valuable service that PHA Canada offers? How has PHA Canada impacted your life? We want to know! As part of our planning for 2017, we want to know what PHA Canada means to you. Contact our Communications Associate, Mariane, at mblaporte@phacanada.ca to tell us what being a part of PHA Canada means to you. We look forward to hearing from the PH community and sharing the periwinkle love! 
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