PHA Canada eNewsletter: Vol.6 #11 December 2016
Season’s Greetings from PHA Canada
On behalf of everyone at PHA Canada, we wish you the very best for the holidays! We hope you enjoy this special time of the year with family and friends, and are left feeling replenished for the new year to come.
2016 has been an incredible year for PHA Canada, filled with change, renewal, ambitious projects, and PHantastic accomplishments. We have made great strides in the areas of early diagnosis, support and community engagement, access to treatment, public awareness, and research. We reflect on our 2016 activities with a sense of achievement that will propel us into the new year. We look forward to the new projects and initiatives that 2017 will bring!
Please note that PHA Canada’s office will be closed from December 23rd to January 3rd.
If you need to contact one of our staff members during this time, please leave a detailed message and they will get back to you as soon as possible after the holidays. If you have an emergency, please contact your PH clinic directly.
Music for Mia: A Concert for Pulmonary Hypertension
In the true spirit of the holidays, Suzanne Grondin’s School of Music
(Bradford, ON) held a benefit Christmas concert in honour of PHighter Mia Berdan. On December 3rd
, young musicians performed at Music for Mia: A Concert for Pulmonary Hypertension
to raise funds in support of PHA Canada. Thank you to Suzanne Grondin for organizing the event and to the Berdan Family for inspiring members of their community to raise awareness of PH and support our programs and services.
Final Meeting of the Toronto PH Support Group
The Toronto PH Support group held its last meeting on Saturday, December 3rd
. Co-leaders Loretta Chu and Ruth Dolan welcomed a full house of PHighters and caregivers for a final meeting filled with emotion. With this last meeting, PHA Canada’s Toronto Chapter turned a page of its history. They will continue to play an active role in the Canadian PHamily, providing support and resources, and ensuring PHA Canada's presence in the Greater Toronto Area. A huge thank you to Loretta Chu and Ruth Dolan for their incredible commitment to the PH community.
History of PH in Canada
PHA Canada is thrilled to announce the publication of a commemorative book on the history of pulmonary hypertension care in Canada. This year, our corporate partner Actelion celebrated fifteen years in Canada. To mark this important milestone and celebrate the incredible progress that our community has seen in the last fifteen years, Actelion collaborated with PHA Canada on the publication of History of Pulmonary Hypertension Management in Canada
. The beautiful coffee table book highlights the development of the PH clinical landscape in Canada with historical portraits of Canada's PH clinics from coast to coast, along with a chapter on PHA Canada’s history and contributions. Thank you to Actelion for supporting this special project. We look forward to sharing the book with our community in the new year.
Early Diagnosis Resources
This year, PHA Canada's Early Diagnosis campaign made huge strides. Thanks to the support of our Medical Advisory Committee and intern Faria Khan, we have produced new materials for raising awareness of PH in the medical community, educating GPs on the diagnosis of PH, and reaching out to at-risk patient populations (e.g. scleroderma patients). We are happy to share our new Early Diagnosis information sheet
, which has been specially designed for medical professionals, and our new Early Diagnosis display, which is available for use at medical conferences and awareness events.
Interview with Brenda Larwill - Brenda Larwill has beaten the odds after being told she had 3 months to live due to Pulmonary Hypertension. Now she's waiting for a double lung transplant to help her beat the odds again.
High Toronto rents 'life or death' for transplant patients - Housing should be available for people on transplant list, says former PH patient and lung transplant recipient Tina Giroux-Proulx.
Predicting Disease Course in PAH Patients Possible with Cardiac Magnetic Resonance, Study Says - A compilation of results from studies published from 2007–14 confirms that cardiac magnetic resonance (CMR) findings are useful in predicting outcomes in PAH patients and, in the future, may help in determining best therapies as the disease progresses.
Pregnancy Risks and Treatment Options for PAH Patients Outlined in Review - Although women with pulmonary arterial hypertension (PAH) are advised to avoid pregnancy, increasing numbers opt to tackle the risks to have a child. A recent review discussed the risks, and the best way to manage pregnancy in PAH.
Raise the Roof Sweet Potato Vegetable Lasagna
Recipe courtesy of Fork Smart!, adapted from Rip Esselstyn’s Engine 2 recipe, contributed by Kate McGoey-Smith, DipNrsg, MSW, RSW, FM
This is the perfect recipe to make a wholesome meal for a large group over the holidays! Recipe serves 12.
garlic clove, chopped
oz. mushrooms, sliced
head of broccoli, chopped
red bell peppers, seeded and chopped
can (15 oz.) no-salt corn, rinsed and drained
tofu package (12 oz.)1⁄2
tsp. cayenne pepper
2 cans(25 oz.) no-oil, no-salt pasta sauce
boxes (14 oz.) of whole grain lasagna noodles
16 oz. frozen spinach, thawed and drained
sweet potatoes, cooked and mashed
Roma tomatoes, thinly sliced
1. Pre-heat oven to 400°F.
2. Sauté the onion and garlic on high heat for 3 minutes in a wok or nonstick pan.
3. Add the mushrooms. Cook until the onions are limp and the mushrooms give up their liquid. Remove from pan with a slotted spoon and reserve in a bowl.
4. Reserve the mushroom liquid in the pan. Sauté the broccoli and carrots for 5 minutes. Reserve with mushrooms and onions.
5. Sauté the peppers and corn until they begin to soften to soften. Reserve in the vegetable bowl.
6. Drain the tofu by wrapping it in paper towels. Break it up directly in the towel and mix pieces with the vegetables.
7. Add spices to the vegetables. Mix together.
1. Cover the bottom of a 9 x 13” casserole with a layer of sauce.
2. Add a layer of noodles. Cover the noodles with sauce (noodles will cook in the oven).
3. Spread the vegetable mixture over the sauced noodles. Cover with another layer of noodles and another dressing of sauce.
4. Add the spinach to the second layer of sauced noodles.
5. Cover the spinach with the mashed sweet potatoes. Add another layer of sauce, a final layer of noodles, and a last topping of sauce.
6. Cover the lasagna with thinly sliced Roma tomatoes.
7. Cover with foil and bake for 45 minutes. Remove the foil, sprinkle with nutritional yeast, and return to the oven for 15 minutes. Let sit for 15 minutes before serving.
Community Events: click to read more!
London PH Support Group Meeting, Jan. 14 (London, ON).
The London PH Support Group will hold a special meeting Saturday, January 14 with guests Erik Sansom, humourist and Lisa Stanley, Psych BA, B. Ed, founding members of Stratford Toastmasters.
London PH Support Group Meeting, Feb. 11 (London, ON).
Join the London PH Support Group's monthly meetings with special guest Laura Greene R.N., Supervisor Clinical Services, Remodulin Patient Support Program, McKesson Canada.
London PH Support Group Meeting, March 11 (London, ON).
Join the London PH Support Group's monthly meetings.
London PH Support Group Meeting, Apr. 8 (London, ON).
Join the London PH Support Group's monthly meetings. Janice Dinsmore Czechowsky, Trauma and Counseling Specialist
Prevent and Reverse Heart Disease, Apr. 28 (Calgary, AB).
A one night seminar with Dr. Caldwell Esselstyn Jr., M.D.
hosted by Fork Smart
in Calgary, AB.
CALL TO ACTION!
Take Action PAH Advocacy Campaign
The Take Action PAH advocacy campaign is ongoing. We have joined forces with the Scleroderma Society of Canada (SSC) to advocate for access to treatment for all PAH patients in Canada—no matter their financial situation, province of residence, or private insurance coverage. Together, our organizations have created a joint microsite that features tools to help members of our community express to provincial governments the importance of access to optimal treatment for PAH. Please visit www.takeactionPAH.ca
to learn more about our current advocacy campaign and how you can get involved.
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 email@example.com
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!