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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.6 #4 April 2016 

Are you ready for World PH Day?
May 5th is right around the corner and we’ll be celebrating the 5th Annual World PH Day with the international PH community! We’ve got a lot planned to mark this global awareness event, and we hope that you’ll join the celebrations. Celebrating World PH Day helps raise awareness of PH, but it is also a way to highlight the strength and resilience of the PH community worldwide.

How to get involved
World PH Day is a global awareness event, but everyone can participate on a local scale! There are many ways for you to get involved, raise awareness, and join the celebrations:

  • Wear purple on May 5th and send us a photo via email (awareness@phacanada.ca) or social media (@PHACanada). We’ll compile all the photos we receive into a great periwinkle collage extravaganza!
  • Make a statement on your social media channels by changing your profile image to this PH awareness ribbon photo, courtesy of PH mom Geneviève Marcoux:
  • Show your support by wearing or distributing PH awareness gear and materials. Download educational materials here.
  • Host an awareness table or organize an event. Find out more here.

Most important of all, have fun! Decorate your home with purple lights, wear a lavender wig, paint your nails periwinkle… why not, it’s time to celebrate!

Official release of our new PH awareness video
We are excited to share our new PH awareness video with the world on May 5th! We’ll be posting it online on the following channels:

PHA Canada website: www.phacanada.ca/world-ph-day
Youtube: www.youtube.com/user/phacanada
Facebook: @PHACanada 
Twitter: @PHACanada 

Help us make it go viral by sharing it with your networks! Don’t forget to tag your posts with #WorldPHDay, #PHAwareness, and #PHACanada. Include us in your Facebook and Twitter posts by using the @PHACanada tag. 

Paint Canada Purple for World PH Day!
Canada will shine bright in periwinkle again this year for World PH Day thanks to the efforts of community members across the country who made requests for monuments and landmarks in their region to be illuminated in purple! This year’s confirmed illuminations include:

  • Tree in front of Fire Hall, Grand Falls-Windsor, NF 
  • City Hall, Plessisville, QC
  • Manoir du Lac William, St-Ferdinand, QC
  • Niagara Falls, Niagara, ON
  • BC Place, Vancouver, BC

In addition, the town of Bradford West Gwillimbury will be making an official proclamation for World PH Day!

If you will be witnessing a World PH Day illumination in person, please send us photos (awareness@phacanada.ca) and we will happily share them with our community!Volunteer for PHA Canada
We are currently in the process of compiling a comprehensive regional database of online resources for the PH community and are looking for volunteer researchers to help us compile resources. If you have some time to give and are familiar with online research and basic data entry, please get in contact us for more information on how you can contribute to this important project. For more details, read the project description here and contact Jamie Myrah at jmyrah@phacanada.ca.


Personal fundraising pages

World PH Day is a great occasion to raise funds to support PHA Canada’s programs and activities. An easy way to raise funds is by soliciting online donations from friends and family through your own fundraising page! Online fundraising is for everyone, not just the tech-savvy. Creating your own personal fundraising page is quick and easy to do, and is a great way to reach out to all your contacts, raising awareness as well as funds. 

You can create a personal fundraising page in conjunction with a fundraiser, like Renae Mohammed who set up a page for the Third Annual PHA Canada Run/Walk for Research. A personal page is also a great way to raise funds in connection with a personal challenge; Geneviève Marcoux is collecting pledges as she’s preparing to climb Mount Washington! A personal page is also a great way to share your PH story and tell those around you what PHA Canada means to you. 

Visit www.phacanada.ca/pledgesforph to create your personal page. If you need assistance, we’re here to help! Contact Mariane at mblaporte@phacanada.ca and she’ll be happy to help you set up a personal page.


Take Action PAH advocacy campaign
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. This includes: a new email tool that enables you to easily ask your provincial government to address the needs of PAH patients; resources for those who are ready to take the next step and meet with their provincial representative; and tips for anyone who wants to share their story with the media. We’re also always happy to provide individualized support to anyone who wants to be involved. We believe that patients should come PHirst, and we need your help communicating that to decision makers!

Patient Evidence Submission to the Common Drug Review
On April 15th PHA Canada and Scleroderma Society of Canada made a joint Patient Evidence Submission to the Common Drug Review in regards to a newly approved PAH treatment called Uptravi (selexipag). We sincerely thank the over 100 people who contributed to the development of this submission by completing our recent PAH patient and caregiver survey. We especially want to thank the patients who agreed to be interviewed for sharing their experiences with Uptravi with us. 

Patient Evidence Submissions are an important part of the drug review process and help ensure that issues important to patients are incorporated into the process in a formal and meaningful way. Copies of patient group submissions can be found by searching for a particular drug on the CADTH website



 

Local Woman Waiting for Transplant—Wendy King of Grand Falls-Windsor is in Toronto waiting for a double lung transplant. Her battle with pulmonary hypertension has brought the community together to support her.
Praxair’s Inhaled Nitric Oxide Therapy for Newborns with Pulmonary Hypertension Approved in Canada—Praxair, Inc., announced that it has received approval, through a subsidiary, for the sale of its Noxivent brand of inhaled nitric oxide in Canada.
Woodside Urging Organ Donors—News report featuring Brendan Gendron.
Pulmonary Hypertension Association of Canada Releases Pulmonary Hypertension Awareness Video for World PH Day 2016—The Pulmonary Hypertension Association of Canada will mark the 5th annual World PH Day on May 05th with the release of a new awareness video.
CHMP Reaffirms Its Positive Opinion of Uptravi to Treat Pulmonary Arterial Hypertension—The Committee for Medicinal Products for Human Use (CHMP), the scientific board of the European Medicines Agency (EMA), has “readopted” its positive opinion in support of Actelion’s Uptravi (selexipag) as a treatment for pulmonary arterial hypertension (PAH).
Mom thriving after double lung transplant—Downtown Whitby Magazine story on Amanda Littlejohn-English.
UK Researchers on the Hunt for "Missing" PAH Genes—A study initiated in the United Kingdom has been designed to discover the “missing genetic causes” of pulmonary arterial hypertension (PAH).


Curry Ginger Carrot Soup

Contributed by: Kate McGoey-Smith, DipNrsg, MSW,RSW, FM, Volunteer Instructor with Fork Smart (Adapted from a recipe by Mary McDougall)


Here’s a recipe to serve sunshine in a bowl! Thanks to Kate McGoey-Smith for sharing another delicious low-sodium recipe from Fork Smart!

Ingredients:
  • 2 cups of sliced leeks
  • 16 ounces of sliced carrots
  • 2 cups of oil-free frozen hash browns
  • 6 cups of no salt veggie broth
  • 1 tbsp curry powder
  • 1 tbs cumin
  • 1tbs fresh dill or tsp of dry dill
  • 1/2 tsp of mixed garlic
  • 1/2 tsp of white pepper
Directions:
  • In a saucepan, add 6 cups of no salt added veggie broth.
  • Add leeks, carrots, hash brown potatoes, and seasonings.
  • Bring to a boil and then reduce to low heat/simmer for 20 minutes.
  • Carefully puree contents with a submersible blender until a smooth and creamy texture is obtained.
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!

May 5: Rare respiratory diseases: hope, research & the future, Montreal, QC. Free public discussion on the latest research and clinical efforts on rare respiratory diseases.

May 5: World PH Day, throughout Canada and worldwide.

June 25: PHA Canada Run/Walk for Research, Ajax, ON. Participate in the Third annual PHA Canada Run/Walk for Research!

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!
 

Community Photo of the Month


Adorable Carys Dempsey who made a donation to PHA Canada! She's an 8-year-old caregiver with a big heart!
 

Happy World PH Day!

 
 
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