PHA Canada eNewsletter: Vol.5 #7 Jul 2015
Summer focus: Advocacy Extravaganza!
This summer, our members have been advocating to provincial and territorial governments on issues that are important to our community. Having publicly-funded access to new and existing PAH treatments, at diagnosis and beyond, is a critical concern for all patients and their loved ones. Because of this, PHA Canada's advocacy campaign is demanding access to adequate treatment for all PAH patients. Our Ambassadors have also been lending their support: in Ontario, Nicole Dempsey and Caroline Liu met with their respective MPPs, Kathryn McGarry and Yvan Baker. In BC, Tarya Laviolette met with her MLA, Shane Simpson, as well as with BC Health Critic Judy Darcy to advocate on behalf of access to all PAH treatments for patients. She and PHA Canada Board Chair Sanjay Mehta also went on air to advocate on behalf of PAH patients. You can watch their interview on GlobalBC’s Unfiltered here!
Our advocacy campaign needs your voice! Help out by:
Visit PHA Canada’s Advocacy page for more information on how you can involved.
Cornwall Stride for Breath and Volleyball tournament!
We were so excited to hear that Shawna Brinkworth, Hanna and Sean Mullin and the Mullin family, and Kriss Ross had once again joined forces for two incredible fundraising events. We were especially inspired by Shawna’s unending dedication and support for the PH community, despite having lost her beloved brother Brenden to the disease in January of this year. In Shawna’s words:
“This year, we held a volleyball tournament and the second Stride for Breath run in Brenden's name. It was harder than I thought it would be without him here, but I know that he would have been happy. We raised over $4000, and had such an amazing response from the beach volleyball tournament that we are expecting a double in funds raised next year because we will have more than a few short weeks to plan. As hard as all of it is, the fact that Brenden was so strong and dealt with so much, with a smile, makes us push forward. The last thing I'll ever let happen is have anyone forget his name.”
The 2nd Annual PHA Canada Run/Walk for Research
On June 27th, Renae Mohammed and her incredible team held the 2nd Annual PHA Canada Run/Walk for Research in Ajax, ON. We were so excited to learn that their event was a fantastic success and raised $10,898.50! The first Run/Walk for Research in June 2014 raised $5,995. We want to say an enormous thank you to Renae for this incredible initiative.
Full articles on Shawna and Renae's PH events will be published in the September issue of Connections magazine.
Supporting Advocacy efforts
As PHA Canada's advocacy campaign enters full-force, we want to ensure that we are advocating from all angles. As you read above, our Ambassadors and other members are hard at work requesting meetings with government representatives and members of the media. At the same time, PHA Canada staff and board members are working behind the scenes to meet with those who will be making the decisions at the provincial level: the provincial drug plans. We have requested meetings with Drug Plan managers in all provinces. A few weeks ago, we were fortunate to meet with Saskatchewan Drug Plan Executive Director, Kevin Wilson, and a few members of his staff. PHA Canada National Manager, Angie Knott, made the trip to Regina and was joined by PH patient Janet Patkau as well as our Board Chair Dr. Sanjay Mehta. We were pleased to learn that the Saskatchewan Drug Plan already plans to consult with PH-treating experts in Saskatchewan prior to implementing any changes to approval and reimbursement practices, which is exactly what our campaign is asking. We hope that as we meet with other representatives, we will have a similar response and that consultations with PH treating experts will take place prior to any recommendations being implemented.
'I'm addicted to helping' - Sharon Williamson, a special constable with the Hamilton Police Service, is giving away her fifth trip to Niagara Falls. Most recently, Williamson gave the weekend getaway to someone who was going through a rough time: Beamsville resident Adam Kingz and his wife Ashley.
Researchers discover treatment for Pulmonary Arterial Hypertension - Research funded by the British Heart Foundation (BHF) has found that a protein targeting the effects of a faulty gene could offer the first treatment targeting the major genetic cause of PAH.
‘This could be a real game-changer’: protein points to cure for life-limiting disease - “We have discovered that patients suffering from PAH don’t make enough of this protein, which is known as BMP9,” Morrell told the Observer. “We have carried out tests that indicate that the protein, which is relatively easy to manufacture, could restore blood vessels in patients’ lungs to a healthy condition.”
Triciribine drug may reverse progression of pulmonary fibrosis and pulmonary hypertension -Researchers at the University of Georgia have discovered that the drug triciribine may reverse or halt the progression of pulmonary fibrosis and pulmonary hypertension.
A Wish Come True: Creating Hope For Kids With Life-threatening Illnesses - Isabelle Platnar is nine years old and lives with PH. Despite her illness, Isabelle Platnar’s mother, Sarah Platnar, describes Isabelle as “having an infectious spirit, optimism and a positive attitude.”
Blankets and cards now on sale!
We are thrilled to announce that the beautiful periwinkle fleece blankets and the stunning greeting cards that you saw at our Conference are now ON SALE through our online store! These cards feature original artistic renditions of the lungs, and the blankets make a fantastic fundraising item. Visit our online store today to order!
15 minute couscous salad with zucchini and parsley
1 1/4 cups boiling water
1 cup whole wheat couscous
5 tablespoons white wine vinegar
1/4 cup tahini
2 small zucchini
1/4 bunch fresh flat-leaf parsley
1 cup grape tomatoes, halved
1 (15-ounce) can chickpeas, rinsed and drained
Optional: lemon juice, chopped fresh mint
In a large, heatproof bowl, pour water over couscous, cover and set aside for 5 minutes. Uncover, fluff with a fork, and set aside to let cool for 5 minutes more. Meanwhile, whisk together vinegar and tahini in a second large bowl. Thinly slice zucchini over dressing, and then use kitchen shears to snip parsley leaves into the bowl; discard stems. Add tomatoes, chickpeas and couscous and toss gently to combine.
Per Serving:210 calories (50 from fat), 6g total fat, 0g saturated fat, 0mg cholesterol, 50mg sodium, 34g carbohydrate (7g dietary fiber, 4g sugar), 9g protein
This month, we're excited to introduce Mariel, who is volunteering as a website developer for PHA Canada!
"I'm currently a Junior Project Manager for Invoke Consulting and my background is Web Development and IT. I’m passionate about helping others, solving problems, reading non-fiction books, and gardening. Helping others and solving problems help me think out of the box and overcome my fears.
For my PHA Canada project, I helped in updating and formatting the contents of the new Living with PH site and in moving the videos and sounds from the old site to the new site. I chose to volunteer with with PHA Canada because I grew up with asthma and I saw that there’s “Pulmonary” in the name of PHA Canada. Before volunteering, I didn’t know anything about Pulmonary Hypertension except that it might mean high blood pressure in the lungs. Now, I know that pulmonary hypertension (PH) is the hypertension in the arteries of the lungs, and is a serious condition."
Community Events: click to read more!
Jul 13: GolPH for PH
Lionhead Golf and Country Club
8:00 AM - 5:00 PM
Join Pat and friends for the inaugural GolPH for PH event to raise awareness and funds for pulmonary hypertension in the Toronto region.