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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #8 September 2016 
Get ready for November Awareness Month!
Every November, PH patients, caregivers, supporters, and health care professionals across the country and around the world take part in awareness-raising activities that put a face to PH, make the signs and symptoms of the disease known, and bring attention to how PH impacts individuals and families. There are many ways in which you can participate in November Awareness Month activities and we have designed tools to help everyone reach out to their networks and show the world what periwinkle-power is all about!
Help us raise awareness of PH in November and don’t forget to follow our Facebook and Twitter feeds throughout the month to stay connected and share posts.
 
Join our Lend a Hand Campaign
The Lend a Hand campaign makes it easy for anyone to get involved in raising awareness at work, school, or among family and friends. When you order a Lend a Hand kit, you receive everything you need to inform those around you about PH, collect tokens of support, and even raise funds for PHA Canada. Our kits have been completely redesigned so if you have taken part in Lend a Hand in the past, we invite you to renew the experience with brand new materials! Click here to learn more and order your kit by October 15.
 
Host an Awareness Event in your Community
Thinking of hosting a special awareness event in your community? PHA Canada staff are here to provide support, materials, and guidance. There are countless ways in which you can make an impact: host an awareness table, request a PH Awareness Month proclamation from your municipality, give a presentation at a local community centre, or organize a 6-Minute Walk event. Click here to get inspired and access resources.
 
Raise Funds to Support PHA Canada
PH Awareness Month is the perfect time of year to raise funds to support PHA Canada’s programs and activities. As a registered charity serving the PH community, we rely on donations to maintain our programs and develop new initiatives to support all Canadians whose lives are affected by pulmonary hypertension. One way you can help us raise necessary funds is by creating a personal online fundraising page, through which you can ask your family and friends to make a donation to PHA Canada. Creating your own personal page is quick and easy. It’s also a great way to raise more awareness as you reach out to all your contacts for support! Click here to build your fundraising page or contact Mariane Bourcheix-Laporte for assistance at mblaporte@phacanada.ca.
 
Request a PHA Canada Seed Grant 
PHA Canada has a limited amount of money available to support member-driven events that will benefit the PH community. If you’re planning an awareness event for November, preparing a special support group gathering, or have big ideas for projects to come, we invite you to fill out a Seed Grant Request Form. To discuss your ideas or obtain more information, please contact Jamie Myrah at jmyrah@phacanada.ca or 1-877-774-2226 x101.

Open Call for Ambassadors (2016-2018)
In 2014, PHA Canada initiated a new Ambassador Program in an effort to extend the organization’s reach across the country and provide leadership to the PH community. We welcomed a group of talented, committed, and passionate individuals to champion awareness and advocacy initiatives. In October, the term for this inaugural cohort of Ambassadors will come to an end. PHA Canada is now accepting applications from PH community leaders across the country to form a new cohort of five Ambassadors for the November 2016 – October 2018 term.
 
Ambassadors work on behalf of PHA Canada to extend our reach across the country and provide leadership to the pulmonary hypertension community. Ambassadors are champions of PHA Canada who seek to inspire others and facilitate collective action in support of a better life for those affected by pulmonary hypertension. We are seeking applications from members who are passionate about furthering PHA Canada’s mission and who have demonstrated commitment to supporting at least one of our five key priority areas: support, education, advocacy, awareness, and research. For more information about the Ambassador program click here.
 
Download the Ambassador job description for information on qualifications, responsibilities, and requirements of this very special volunteer position.
Application deadline: October 17, 2016
To apply, please send a resume and one-page cover letter to Jamie Myrah, Executive Director, at jmyrah@phacanada.ca. We look forward to receiving applications from passionate community members and announcing our new Ambassador cohort during November Awareness Month!

Alberta PH Forum

We’re eager to meet members of the Alberta PH community Saturday October 1st at the Alberta PH Forum taking place in Red Deer! Our provincial steering committee has put together an exciting program for this free daylong educational and networking event. Sessions will include:
  • Support Systems for Coping with Chronic Illness, presented by social worker, Kristen Lambert
  • Eating Well with Pulmonary Hypertension, presented by dietician, Lauren Rieger
  • The Future of PH Therapies, presented by Dr. Vikram Gurtu
  • Panel Discussions with Medical Experts in the care of both pediatric & adult patients
  • Tips & Tricks for Living Well with PH, presented by a panel of experienced patients and caregivers
Click here to access more information about the event, sessions, and presenters. If you haven’t registered yet and are planning on attending, there’s still time for you let us know you’re coming; please fill out the registration form as soon as possible (registration will also be open on site). We look forward to seeing you in Red Deer!
Fall 2016 Connections Mailing
We're preparing to mail out the Fall 2016 issue of Connections Magazine, which features a special section on transplant. Receiving the magazine is one of the benefits of membership and only members in good standing will receive a copy of the upcoming issue. Don’t miss out on this opportunity to catch up with PH community news, read inspiring patient and caregiver stories, get to know PH medical professionals, and learn about developments in PH research and therapies. If your membership has lapsed, make sure to renew it by the end of the month by filling out our online membership renewal form. If you have questions about your membership status or want to become a new member, contact our Administrative Coordinator, Ethel Abiera, at eabiera@phacanada.ca.

PH Awareness Flag

We are happy to introduce PHA Canada’s official PH Awareness flag! In the last weeks we asked our community to vote for their favourite flag and the design featured above won by a landslide. We will be producing a limited number of these flags for our members to use during November Awareness Month at community events or to hoist at their local City Hall. Contact our Communications Associate, Mariane Bourcheix-Laporte, at mblaporte@phacanada.ca to request a flag for use in November.

Order PH Educational Materials and Purchase PH Awareness Items
We have everything you need to make a big periwinkle splash for November Awareness Month! Visit our online store to order free educational materials and purchase PH awareness paraphernalia including periwinkle bracelets; purple ribbon key chains, pins, and charms; PHA Canada pens, t-shirts and blankets; and other lung-themed goodies. 



 

Health Canada Advisory: Adempas (riociguat) not safe in patients with PH due to lung disease idiopathic interstitial pneumonia - A recent study investigating the effects of Adempas (riociguat) in patients with pulmonary hypertension associated with idiopathic interstitial pneumonia (PH-IIP) has been terminated early due to safety concerns. PH-IIP is a particular type of pulmonary hypertension caused by inflammation and scarring in the lungs. Adempas (riociguat) is not approved to treat PH-IIP and RISE-IIP was studying whether Adempas (riociguat) could be used to treat this new group of patients. The discontinuation of the RISE-IIP study does not affect the approved use of Adempas (riociguat) for other forms of pulmonary hypertension (PH).
Genetically-modified probiotic may one day treat pulmonary hypertension - An oral, genetically-modified strain of the probiotic Lactobacillus was used to treat rats with high blood pressure in the lungs, which resulted in reduced blood pressure, improved heart contractility, and reduced heart wall thickness.
Molecular pathway newly linked to PAH may be protective - Both patients newly diagnosed with pulmonary arterial hypertension (PAH) and animal models of the disease show increased activity of a molecular pathway, known as NNMT-MNA which is involved in metabolic and inflammatory reactions.
Treprostinil Long-term IV Infusion for PAH - A New Device for Treating Pulmonary Arterial Hypertension Pulmonary arterial hypertension (PAH) is a serious disorder with a mortality rate of 10%-15% annually.
PH Patients in Canada Urged to Sign Petition for Public Funding of Newer Treatments - Serena Lawrence, a young Canadian living with pulmonary hypertension (PH), has launched an online petition to raise public consciousness of and draw government attention to PH in Canada.


Barbecued Pulled-Mushroom Sandwich 

Recipe contributed by Kate McGoey-Smith, DipNrsg, MSW, RSW, FM, Volunteer Instructor with Fork Smart

Before storing your barbecue for the winter, treat yourself to some mouth-watering barbecued pulled-mushroom sandwiches. 



Ingredients:

  • Flavoured wood chips (e.g. apple wood) and a metal smoker box 
  • King mushrooms (these mushrooms are large and feature a brown cap and long and thick stem with roots still attached – often found in the Super Store or Walmart produce section. Count four regular packages for six servings. 
  • White onion – large, thinly sliced
  • ½ cup low-sodium barbecue sauce 
  • Low-sodium whole grain bun or rye bread

Instructions:

  1. Soak wood chips in bowl of water for 30 min. and place in smoker with lid off.
  2. Pre-heat barbecue on maximum heat.
  3. Place smoker box in the hottest section of barbecue and close barbecue lid for 15 min. Allow smoke to build.
  4. Wash mushrooms and remove roots. Place mushrooms on upper rack of the barbecue. Close lid and cook for 15-20 min. until very brown (check regularly to avoid burning).
  5. Remove cooked mushrooms and cut in half from cap to end of stem. Using the prongs of a dinner fork “pull” mushrooms from cap to end of stem in long, length-wise strands (strands should have the texture of pulled-pork).
  6. In a hot, dry frying pan, add thinly slice onion and sweat until caramelized (stir often).
  7. Add pulled mushrooms to frying pan and then add barbecue sauce until all mushrooms are well-coated.
  8. Toast bun/bread.
  9. Pairs well with coleslaw.

Nutritional information: fat: 0 g; approximate sodium content for barbecued mushroom mixture (depending on sauce): 190 mg per serving.

The Pulse 

  
Community Events: click to read more!

October 1: PHA Canada Alberta PH Forum, Red Deer, AB. Attend this free educational and networking event. 

October 1: London PH Support Group Meeting, London, ON. The London PH Support Group has been invited to the Scleroderma Patient Support Group-London Fall Meeting.

October 24 to November 3: Third Annual Run Walk, Swim or Bike/Spin PH Challenge, Bradford, ON. Come participate in this week-long Run, Walk, Swim or Bike/Spin Challenge raising funds for PHA Canada.

November 2: Fourth Annual DINE for the CAUSE and Silent Auction, Ottawa, ON. Dinner and silent auction raising funds for PHA Canada.

November 4: Fourth Annual Talitha's Hope 4 a Cure, Fort McMurray, AB. Fundraiser for the PH clinic at the Stollery Children's Hospital.

November 5: Sail-o-thon Benefitting PHA Canada, Vancouver, BC. Sail-o-thon in Vancouver's English Bay to raise funds in support of PHA Canada.

November 5: Fourth Annual Masquerade Ball, Calgary, AB. Fundraiser to support the pulmonary hypertension community.

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


Board members Renée Levaque and Ruth Dolan with volunteer Jeannie Tom working at PHA Canada’s “Marketplace” display at the National Scleroderma Conference in Montreal, September 17th.


 
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. 
 

 
 
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