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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.5 #12 Dec. 2015 

November PH Awareness Month Wrap-up

This year again, the PH community across the country has contributed to raising awareness of pulmonary hypertension throughout the month of November. We are happy to report on 30 days of periwinkle power filled with awareness activities and fundraising events. Thanks to the combined efforts of all those who participated in awareness activities big or small, we have hope that increased awareness of the disease, its symptoms, and its impact on patients, caregivers and families will lead to a better life for all Canadians affected by pulmonary hypertension. Here are some highlights of our campaigns and an account of the events our members and supporters organized.

Lend a Hand Campaign
We sent out almost 10,000 blue handprints to members and supporters throughout the country as part of our annual Lend a Hand for PH campaign. This year, our goal was to collect 10,000 handprint signatures and the same amount of dollars in donations. We are still compiling total amounts of handprints and money raised through this campaign, so we can’t announce grand totals just yet, but we are very happy to report on the campaign’s success! This year our partner Actelion offered to match collected donations up to a total of $10,000. This means that all donations collected as part of this campaign will be doubled! We will direct half of the money raised to support our research scholarship.

Special thumbs up to Jolene and Quentin Mosiondz who collected $1622.50 in donations, and to Candice Gabelmann and Bayer employees who raised $1000 and collected 140 signatures! 

Awareness Campaigns
If you follow us on social media you know we’ve been busy promoting PH awareness online! This year, our PH awareness messaging was closely tied to PHA Canada’s number one priority: increasing early diagnosis rates for pulmonary hypertension. Thanks to the contributions of our members, we were able to post about patients’ “PH Tipping Point” stories. With this campaign, we aimed to raise awareness of the fact that many PH patients seek medical attention or receive a PH diagnosis only after symptoms have gotten so severe they can no longer be ignored. We’ve received lots of responses from this campaign and additional “PH tipping point” contributions so we’ll be extending this campaign into the new year. If you’d like to share your “PH Tipping Point” story, please contact Mariane at mblaporte@phacanada.ca.

We are focusing our efforts on raising awareness of the symptoms of PH because we think there are up to 5,000 Canadians who may be suffering from PH but who have not received a proper diagnosis. We are working on two fronts: sensitizing the general population against the normalization of symptoms, and assisting family doctors in becoming more attuned to the manifestations of PH so that they may identify and refer patients earlier.

PH Awareness Month Proclamations
Thank you to our members and supporters who have reached out to municipalities across the country and obtained city councils to officially proclaim November as PH Awareness Month. Rocky View County, AB; Cornwall, ON; Bradford, ON; Burlington, ON; and Toronto, ON are some of the localities that issued PH Awareness Month Proclamations this year.

PH Awareness Month Personal Pages Fundraiser
Thanks to the efforts and energy of our members and supporters, we have been able to raise more than PH awareness in the last few weeks. The PH Awareness Month personal fundraising pages set-up by our biggest supporters, including many Board Members and Ambassadors, have raised donations of over $7000! These funds will serve to support our programs and services. We thank all those who generously contributed to this fundraising effort by soliciting and contributing donations!

November was a busy, busy month! Here are the highlights of our community’s PH Awareness Month activities from coast to coast:

Vancouver, BC: PHA Canada held a PH awareness kiosks at Granville Island Public Market (Nov. 7-8) and at the St. Paul’s Hospital Continuing Medical Education Conference for Primary Care Physicians (Vancouver Convention Centre, Nov. 24-25).Edmonton, AB: Ambassador Stephanie Ricci and PHighter Sophia engaged in local PH Awareness activities.
Fort McMurray, AB: The Third Annual Talitha's Hope for a Cure took place at the Sawridge Inn (Nov. 7). The event raised funds to support the Stollery Children's Hospital.
Calgary, AB: Ambassador and PH Nurse Gail Nicholson held a PH Awareness kiosk.

West Lorne, ON: Ambassador Kerry Pierce and PHighter Everleigh organized a PH Awareness Day at Everleigh’s school, where they collected signatures, distributed PH awareness material, and sold over 300 PH ribbon cookies!
Bradford, ON: Board member Ruth Dolan organized the Second Annual Run/Walk, Swim, Bike/Spin PH Challenge (Nov. 5-11). Participants raised a total of $3580, half of which will be directed to our research scholarship. 
Stratford, ON: Grace Wickenheiser and Marion Laird-Roth held a PH Awareness kiosk at the Stratford Farmers’ Market (Nov. 21-22).
Oakville, ON: Barbara Heal and members of PHA Canada’s Toronto Chapter organized the Trivia Fun Pub and Grub Night (Nov. 7), which raised $3649.
Ottawa, ON: Ambassador Teri Kingston joined forces with the Ontario Lung Association to organize the Third Annual DINE for the CAUSE and Silent Auction at Biagio’s Italian Kitchen (Nov 18). The event raised $1085. Board member Carolyn Doyle-Cox and the Ottawa Support Group organized a 6-Minute Walk for Breath event at the Ottawa Heart Institute (Nov. 7), which raised around $2500. 
Montreal, QC: The Fondation HTAPQ and the Jewish General Hospital PH Clinic organized a PH Awareness Walk (Nov. 7).
Mont-Tremblant, QC: Ambassador Danush Rudolf and her family participated in the 24h Tremblant challenge to raise funds in support of sick children and their families. The PH Phighters team raised over $12,000.


PHA Canada continues to fight to ensure that all PH patients have access to all Health Canada-approved treatments. PAH patients in Canada face the threat of not being able to access optimal treatment through provincial public drug plans. We are fighting to ensure that PAH treatment decisions are made by specialists, not dictated by budgetary concerns.
 
In November 2013, Health Canada’s approval of Opsumit offered new hope for adult PAH patients and their physicians. In January 2015, the Common Drug Review (CDR) recommended that Opsumit be publicly funded for the long-term treatment of PAH to reduce morbidity in patients with Functional Class II or III. However, despite this, PAH patients outside of Quebec still do not have publicly funded access to the only oral treatment proven in a randomized controlled trial to reduce long-term morbidity in patients, including reductions in PAH worsening and hospitalizations. Without public funding for Opsumit, PAH doctors are restricted from exercising their individual clinical judgement, which is essential to the proper treatment of PAH, and patients are unable to access optimal treatment for their disease.
 
On December 3rd, PHA Canada organized an advocacy day at the Ontario legislature in partnership with the Scleroderma Societies of Ontario and Canada. In total, 12 advocates gathered at Queen’s Park, including Dr. Sanjay Mehta, Dr. John Granton, Ruth Dolan, Darren Bell, Ambassador Nicole Dempsey, and members Fatiha Aburaneh, Jeannie Tom, and Joan Paulin. Our advocates gave a media conference, attended Question Period, and met with MPPs and members of the Ontario Lung Health Caucus. Find out more about this event in our press release.
 
We are hopeful that our continued advocacy efforts will help patients living with PAH have access to treatment throughout Canada. Please help us ensure that our message is LOUD and CLEAR! We urge all provincial governments to ensure that all patients living with PAH have publicly funded access to Opsumit without further delay. Please take a few minutes to email your Premier and Minister of Health by using PHA Canada's easy-to-use tool: phacanada.ca/takeaction.  Please send as many messages as possible before the holidays!

Medical Advisory Committee
We are happy to welcome four new members to the Medical Advisory Committee (MAC). This Committee, consisting of physicians specialising in the field of PH, is responsible for taking the lead on medical issues that come to PHA Canada and providing assistance in completing projects that reach out to the medical community. Dr. Marc de Perrot (Toronto), Alan Kaplan (Richmond Hill, ON), and Dr. John Swiston (Vancouver) have been appointed and Dr. Krista Kemp (Moncton, NB) will join the committee in October, 2016. Dr. Lisa Mielniczuk (Ottawa) has taken on the position of Committee Chair, replacing Dr. Sanjay Mehta, who has chaired the Committee since its inception
 
Dr. Lisa Mielniczuk is an Associate Professor of Medicine at the University of Ottawa and a cardiologist at the Ottawa Heart Institute. In addition, Dr. Mielniczuk is the Director of the Heart Failure Program and Medical Director of the Cardiac Transplantation Program as well as Medical Director of the Pulmonary Hypertension Clinic.
 
PH Counsellor Program
We are sorry to announce that due to unforeseen circumstances, we have closed our PH Counsellor Support Line temporarily. Our PH Counsellor program was launched as a pilot program in September, and the PH Support Line service was intended to be in operation until the end of the year. We will be assessing this program to ensure that it answers the specific needs of our community and hope to further develop it in the new year. Resources developed through the pilot program (including self-healing webinars and the PH Emotional Resource: Handbook for Patients) will be accessible on our website.

Periwinkle Extravaganza Holiday Sale!
Our PH Awareness Month Periwinkle Extravaganza sale was a huge success so we’ve decided to extend it ‘til the holidays! Our most popular items are on sale, including periwinkle lung shirts, periwinkle fleece blankets, lung cards, and awareness wristbands! We’ll throw in a PHA Canada pen, awareness pin and awareness keychain with every purchase! We’ve got your Secret Santa and holiday stocking needs covered!
Visit our online store to make an order!





Living with pulmonary hypertension - A family’s struggle to deal with the fatal disease—On Monday, Nov. 16, Everleigh Pierce turned five years old. Two days later, her school, Caradoc Public School in Mt. Brydges, had planned a special event to celebrate her birthday. The school was decorated and the hallways looked like a scene taken from a Western University’s homecoming day, as all children in the school were wearing purple shirts in honour of their classmate.
PH Awareness Month story: CTV Barrie Nov 24 2015—This CTV Barrie news segment aired during PH Awareness Month and features PH Patient Linda Shadman and Dr. Jeremy Feldman who discuss Linda's diagnosis and treatment story.
PH Advocates Speak on the Goldhawk Fights Back Show—PH Advocate Barb and Danny called-in the Goldhawk Fights Back Show on Zoomer Radio to talk about why PAH patients should be able to access all Health Canada–approved treatments and why PH specialists need to be able to prescribe the treatment they think will yield best results for their patients.
PHA Canada Challenge in Bradford—The 2nd annual Run/Walk, Swim or Bike/Spin PH Challenge, a week-long fundraiser for the Pulmonary Hypertension Association of Canada, wrapped up on November 11.
A True Warrior's Warrior—Brendan is your typical seven-year-old. A Grade 2 student at Rose Valley Elementary, he likes to run around with his friends, and play the sport he loves – hockey. Problem is, he can't. Brendan was diagnosed almost three years ago with idiopathic pulmonary hypertension, a disease that severely limits his ability for physical exertion.
Professor finds likely key to cure for pulmonary hypertension—According to a recent Yale co-authored study that was conducted at the Yale School of Medicine, research on smooth muscle cell progenitors could be the key to finding a cure for pulmonary hypertension.
The road from diagnosis to support—In just a few months, Louise Taylor went from living an active life filled with good health to one that turned her into a fatigued, house-bound patient. “Suddenly I was very short of breath. Next came five months of tests: heart, lungs, sleep apnea and many blood tests,” she said.
November is Pulmonary Hypertension Awareness Month—November 2015 has been proclaimed Pulmonary Hypertension (PH) Awareness Month, thanks to Rocky View County (RVC) council voting 7-1 to approve a request submitted by Langdon resident Heather Zloty.

Ginger Noodle Dish
Contributed by: Kate McGoey-Smith
It is a Christmas Eve tradition at Kate's home to gather for an Asian-inspired meal. Here is a Ginger Noodle dish that everyone enjoys together! It makes 4 1-cup servings.
Ingredients:
1 8-ounce package of soba noodles
3 tbsp seasoned rice vinegar
3 tbsp reduced-sodium soy sauce (see notes)
2 tsp finely chopped fresh ginger
2 garlic cloves, minced
1/2 - 1 jalapeno pepper, finely chopped
2 green onions, finely chopped, including tops
1/4 cup chopped fresh cilantro (optional)
Directions:
Cook noodles in boiling water according to package directions. When tender, drain and rinse. Mix vinegar, soy sauce, ginger, jalapeño pepper, green onions, and cilantro, if using, then pour over cooked noodles and toss to mix. Serve with a side of steamed broccoli and other veggies for a colourful and delicious presentation fit for a party!
 
* To reduce salt even further without giving up flavour check out this product (often found in your local health stores) “Coconut Secret Raw Soy-free Seasoning Sauce” - it is 226 mg per 2 tsp .
 
** If you would like even further reduced salt try this recipe for Soy Sauce Substitute: In a sauce pan combine 4 tbsp no salt added veggie broth with 4 tsp balsamic vinegar, 2 tsp dark molasses, 1/4 tsp ground ginger, 1 pinch of white pepper, 1 pinch garlic powder and 1 1/2 cups of water. Boil gently until liquid is reduced to about 1 cup, about 15 minutes. If you use Campbells No Added Salt Veggie Broth, the total salt in this substitute sauce recipe is 10.2
mg of salt!!!
 
The Pulse 

  
Community Events: click to read more!

Dec. 09: Forks Over Knives: Documentary Screening with Kate McGoey-Smith, Studio 89, Mississauga, ON. Meet Kate McGoey-Smith, diagnosed in 2007 with Idiopathic Pulmonary Arterial Hypertension (PH), a rare, incurable progressive terminal illness which left her: on continuous oxygen, legally blind, on the lung-transplant monitoring list and progressed to needing insulin for Type 2 Diabetes.

Dec. 12: London PH Support Group Meeting, London, ON. The London PH Support group will meet Saturday December 12, 1:30 p.m. at the Westmount Branch of the London Public Library.
 
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!
 

Reflections from Alyson, PH Counsellor
 

In this section, our PH Counsellor addresses emotional concerns submitted by community members.

Question:
Submitted by a CTEPH patient who underwent successful PEA surgery.
 
I am supposedly cured of PH. I should be grateful and not complain. And I am grateful. My life had been saved!! Of course I am grateful. However, since my surgery I have had so many medical problems which are "side effects" of the surgery. Somehow I need to put it into prospective--weighing the side effects with being alive! When I write it, I see it’s a no-brainer. But living every day in uncontrolled pain seems to take all the perspective away.
 
Response:
The feeling I get from your message is the internal conflict you feel. Relief and gratefulness to be cured of PH but also resentment of all the pain you still struggle with every day. It sounds like you want to feel more grateful but it is hard to feel that when you are suffering intensely with pain every day. One way of getting to a more peaceful place can be honouring fully what we feel. If we are angry about the pain that is totally legitimate. Fighting what we feel blocks us ever getting to peace and acceptance. 
 
Holiday break

Please note that PHA Canada’s office will be closed from December 19, 2015 to January 4, 2016. Programs and services will resume in the new year. If you contact us over the holiday break, please leave a detailed message and we will respond to it as soon as possible in January.

 
Our very best wishes for the holidays to all of our members and supporters!



 
 
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