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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #2 Feb. 2016 

Our community is full of love and February is the perfect month to share it! We try to spread more periwinkle love every day and are sending a big virtual hug to the whole Canadian PH community. 
Paroian Family PHA Canada PH Research Scholarship
We are happy to announce that we have awarded the first Paroian Family PHA Canada Research Scholarship to Sylvia Rinaldi, a registered dietitian and PhD student in the Department of Health and Rehabilitation Sciences at the University of Western Ontario. Please see the Research Corner section below for a description of Sylvia’s proposed research.

Since the summer of 2014, PHA Canada has been gathering funds for PH research and, thanks to the tremendous support of our community, we have raised enough funds to award another full research scholarship. We will soon be accepting applications and are hoping to announce the second scholarship recipient in the spring. For more information on the scholarship and to stay informed about upcoming application deadlines, please visit our website.

The allocation of PH research scholarships is made possible thanks to the Paroian Family’s generous donations and our members’ continued fundraising efforts. Because research is synonymous with hope, our goal is to continue supporting young Canadian PH researchers. There are many ways in which our community members can get involved. If you would like to fundraise for or make a donation towards our research scholarship fund, please contact Jamie Myrah at jmyrah@phacanada.ca

Campaign to Treat Rare Disease in Ontario
On February 25th, MPP Michael Harris (Kitchener-Conestoga) will debate a Private Member’s Motion on creating a Select Committee for Rare Disease Treatment Funding at the Ontario Legislature. Since the beginning of the year, he has been touring the province to meet people affected by different rare diseases, collect their stories, and hear their concerns about access to treatment.

PH treatment accessibility is an important issue for patients in Ontario and throughout the country. We hope that MPP Harris’s initiative brings attention to the need for ALL PH patients to access ALL Health Canada-approved treatments. If you’re an Ontario resident, we encourage you to get involved. Please visit treatraredisease.ca to find out how you can make your voice heard and to register to attend the motion reading at Queen’s Park on February 25, 2016.  

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.


Silvia Rinaldi, Paroian Family PHA Canada PH Research Scholarship Recipient
Description of Research Project

Pulmonary hypertension (PH) is a serious lung disorder which results from the narrowing of the pulmonary arteries which carry blood from the heart to the lungs. The goal of the study is to determine the nutrition profile of PH patients with various disease subtypes and disease severity. The first objective is to determine the percentage of patients who have higher or lower than normal calorie needs. The second objective is to determine if there are specific nutrients of concern in this population. The third objective is to measure body composition and nutritionally relevant functional markers such as hand grip strength ...  To continue reading, please click here.

Sylvia Rinaldi is a registered dietitian and PhD student in the Department of Health and Rehabilitation Sciences at the University of Western Ontario with a focus on health and aging. Sylvia earned her BSc in Biochemistry at the University of Windsor and a BSc and MSc in Foods and Nutrition at Brescia University College. Her research interests involve maintaining and improving the nutritional status of patients with chronic respiratory disorders including pulmonary hypertension and interstitial lung disease. As a registered dietitian she values evidence-based and research-driven clinical practice. This guides her research investigations into the links between nutrition and disease and how improvements in nutrition may have the potential to improve disease outcome and quality of life. 

2016 PH Awareness Campaign
It might seem like November has just come and gone, but we’re already gearing up for our upcoming PH Awareness Month campaign! We are very happy to be collaborating with Cineworks Independent Filmmakers Society, a Vancouver film cooperative, and filmmaker Tyler Gamsby from Creek Water Media, to produce a series of PH Awareness videos. PHA Canada is participating in Cineworks’s Play It Forward program, which supports the development of campaign videos by pairing non-profit organizations with independent filmmakers in the Vancouver area. The videos will highlight key challenges faced by the PH community, promote early diagnosis, and educate about PH and its main symptoms.
PH Wallet Cards
Most people have never heard of pulmonary hypertension, and it can be difficult for patients and caregivers to explain the disease to those around them. PHA Canada has produced wallet cards that are easy to carry and distribute to people who want to know more about the disease. These cards can also serve as a go-to resource to educate those who, unfortunately, are not sensitive to the realities of living with an invisible disease. These cards come shrink-wrapped in packages of 50. Order your FREE packs through our online store.




New chapter begins for Grand Falls-Windsor PH patient—When Wendy King started experiencing shortness of breath in the fall of 2010 she thought she had developed asthma. Never did she imagine that less than a year later she would be given a diagnosis of pulmonary hypertension (PH).
Accessibility of PAH Therapies in Canada Part I: Access to Opsumit—Interview with Dr. Sanjay Mehta by Serena Lawrence.
Accessibility of PAH Therapies in Canada Part II: Treatments for PAH That Are Not Available In Canada—Interview with Dr. Sanjay Mehta by Serena Lawrence.
Actelion receives Health Canada approval for Uptravi (selexipag) for the long-term treatment of pulmonary arterial hypertension—Health Canada has granted a Notice of Compliance (NOC) approving the orally active, selective IP prostacyclin receptor agonist Uptravi (selexipag), for the treatment of pulmonary arterial hypertension.
New biomarkers for improved treatment of severe heart and lung disease—New blood biomarkers reflecting vasoreactivity in lung blood vessels of patients with heart- and lung disease, can lead to simplified diagnostics and better evaluation of treatment for patients with the condition pulmonary arterial hypertension (PAH). 
 

“Can Opener Chili”
Contributed by: Kate McGoey-Smith, DipNrsg, MSW,RSW, FM, Volunteer Instructor with Fork Smart

Do you have a can opener? Well this prep only takes a few minutes and the results are delicious and nutritious without using any salt or oil!!
  • 1 796 ml can of no salt added diced tomatoes—drained
  • 1 540 ml can of no salt added black beans—drained and rinsed
  • 1 540 ml can of no salt added dark red kidney beans—drained and rinsed
  • 1 341 ml can of no salt added peaches and cream whole kernel corn—drained
  • 4 tbsp. low salt tomato paste
Steam together for 3 mins in microwave:
  • 1 diced green pepper
  • 1 diced red pepper
  • 1/2 diced red onion
Add all the above ingredients into crock pot and to ‘gourmet’ it up add:
1 1/2 tbsp. of chili powder; 1 1/2 tsp of smoked paprika; 1 tbsp. cumin; 1/2 cup of nutritional
yeast; and 2 tbsp. lime juice (optional: a couple dashes of hot sauce—check sodium and use according to own regime and taste preference).
 
Nutritional information (for 1 cup serving): 300 calories; Fat 1 g (Saturated /Trans Fats - 0 g); Cholesterol 0 mg; Sodium 12.5 mg; Protein 10 mg; and Fiber 11 g.

Check out “The Fork Smart Podcast”— weekly editions on itunes or forksmart.org—a great place
to hear helpful, evidence-based nutrition and ways to eat healthier!!
 
The Pulse 

  
Community Events: click to read more!

Feb. 13: London PH Support Group Meeting, London, ON. Join the London PH Support Group for their monthly meeting.

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

March 5: Twenty Mile March in Honour of Everleigh Pierce, Delaware to Battle Hill, ON. To commemorate the 202nd anniversary of the Battle of Longwoods, the UTMRS will be walking from Delaware to Battle Hill to raise funds for PHA Canada.

March 5: Toronto PH Support Group Meeting, North York, ON. Join the Toronto PH Support Group for their monthly meeting.

Apr. 2: Acute and Chronic Pulmonary Embolism Symposium, Toronto, ON. A comprehensive overview of pulmonary emboli.

July 15: GolPH for PH, Brampton, ON. Join the GolPH for PH tournament, raising funds for PHA Canada.


 
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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