PHA Canada eNewsletter: Vol.7 #1 January 2017
Mark Your Calendars for our First Eastern Regional PH Symposium!
We’re excited to announce that this year’s regional educational and networking event will be held at the Westin Prince Hotel in Toronto on October 13-14, 2017. Join us Friday night for a special welcome reception and Saturday for a full day of educational sessions featuring medical experts and your PH peers. Stay tuned for upcoming details on volunteer opportunities and eligibility requirements for travel scholarships.
PHA Canada is committed to bringing the PH community together to learn more about PH and make valuable connections with one another. The Eastern Regional PH Symposium is part of our commitment to making sure that such events are made available to as many people – in as much of the country – as possible. In 2016, we hosted our first PH Forum for the Alberta PH community, in addition to supporting provincial events in BC and Quebec by our affiliate partners BCPHS and Fondation HTAPQ.
For more information on the event, visit www.phacanada.ca/easternsymposium2017
If you have any questions about the event, are interested in getting involved, or have presentation topics to suggest, please contact our Executive Director, Jamie Myrah, at firstname.lastname@example.org
Get Ready for World PH Day 2017!
Paint Canada Purple
In the dead of winter, springtime may seem far away, but World PH Day 2017 will be here sooner than we think! In recent years, PHA Canada has celebrated World PH Day with Paint Canada Purple
, an awareness campaign that illuminates monuments and landmarks across Canada in purple. Which monument would you like to see lit up this year? Now is the time to get a head start by making a request for your favourite landmark to shine bright on May 5th
. Visit www.phacanada.ca/worldphday2017
for Paint Canada Purple
resources, including a list of potential monuments in communities across the country.
Thinking of organizing a special event in your community to mark this global #PHAwareness day? We invite you to apply for a PHA Canada Seed Grant. We have a limited amount of money available to support events that will benefit the PH community. May 5th
is a great opportunity to raise awareness in your community with an educational activity or to celebrate periwinkle power with a special support group gathering. Don’t wait for the crocuses to spring; we invite you to fill out a Seed Grant Request Form
as soon as possible. To discuss your ideas or obtain more information, please contact Jamie Myrah at email@example.com
or 1-877-774-2226 x101.
Access to Treatment: Share Your Story
Since 2013, Health Canada has approved three new oral therapies for the treatment of PAH: Opsumit (macitentan), Adempas (riociguat), and Uptravi (selexipag). However, none of these treatments are accessible to PAH patients in Canada through public funding, with the exception of Opsumit (macitentan), which is only funded in Quebec. We are fighting for publicly funded access to these new Health Canada-approved treatments so that PH specialists are able to exercise their individual clinical judgement, which is essential to the proper treatment of PAH.
We are collecting stories from patients who are concerned about accessing optimal treatment for PAH. If you or a loved one living with PAH is currently unable to access Opsumit (macitentan), Adempas (riociguat), or Uptravi (selexipag), please contact our Executive Director, Jamie Myrah (firstname.lastname@example.org or 1-877-774-2226 x101) to share your story.
PHA Canada has joined forces with Scleroderma Canada, Fondation HTAPQ, and Sclérodermie Québec to ensure that all PAH patients in Canada be able to access optimal treatment to manage their disease—no matter their financial situation, province of residence, or private insurance coverage. We are in the process of updating our #TakeActionPAH
website and will soon release new tools and resources for our community to get involved. In the mean time, visit www.takeactionpah.ca
to tweet to decision-makers or click on the links below to learn more about the issues our community faces:
Medikidz Explain Pulmonary Arterial Hypertension: A Superhero Adventure Inside the Human Body!
We are very happy to announce the publication of this new free resource, which has been specially designed to explain the basics of PAH to children. This 32-page full-colour comic book can help people living with PH explain to the children in their life what’s happening inside their bodies and why they may be limited in their activities. This is also a great tool for families of children with PH to help little PHighters and their peers understand the disease.
This resource was produced by Medikidz and has been reviewed by Canadian PH specialists and endorsed by PHA Canada. PHA Canada acknowledges and thanks our corporate partner Actelion for sponsoring the production of this resource in Canada.
Click here to order your free copy.
Please note that due to limited stock, we are only able to provide one copy per household. Available in English and French.
Artificial intelligence creates 3D hearts to predict patient survival - Machine-learning has predicted death risk in people with serious heart disease faster and more accurately than current methods.
Interview with Judith Moatti: Natasha Hall Show - PAH patient Judith Moatti talks about PH and the importance of early diagnosis.
Will you soon be diagnosed just by breathing? - A 2,400-year-old medical hypothesis – that various diseases carry “chemical seals” identifiable in breath samples – has been confirmed by an international study.
Hiking to honour her mother's memory - Interview with Marie Andrée Malette, Gatineau resident who is raising money for the Ottawa Heart Institute in memory of her mother.
Confronting a chronic disease - Interview with Susan Bailey, PH patient, and her husband Jim.
PEA for CTEPH associated with long-term survival - A team of researchers from the United Kingdom conducted a study that examined the factors related to long-term, post-surgery outcomes in CTEPH. The study demonstrates that PEA for CTEPH may lead to long-term survival with good functional status.
Asian Corn Soup
Contributed by Kate McGoey-Smith, courtesy of Fork Smart
Here’s a perfect recipe to celebrate the Lunar New Year. Happy Year of the Rooster! We hope it brings happiness and prosperity to the Canadian PHamily.
- 900 ml of no-salt vegetable broth
- 2 cans (398 ml each) of no-salt cream corn
- 2 cans (398 ml each) of sliced straw mushrooms – rinse well to remove excess salt
- 1 cup of kernel corn (frozen or no-salt canned corn)
- 1 pack of white or brown shimeji mushrooms – cut off roots and break mushrooms apart
- 1 pack of enoki mushrooms – cut off roots, then cut mushrooms in sections
- ½ pack of light tofu – cut in thin length-wise strips, then cut in half
- 1 tbs. soy-free soya sauce (try Naked Coconuts brand)
- ¼ tsp. white ground pepper
- 2 tbs. cornstarch
- Combine all ingredients in a large pot. Add cornstarch last, sifting it so it does not create clumps, but thickens the soup.
- Boil over high heat, then reduce heat and simmer for approximately 5 minutes until soup thickens. Ready to enjoy!
Recipe makes 10 cups.
Nutritional information (per cup): 65 mg of salt, 0.4 g of fat
Kate McGoey-Smith, DipNrsg, MSW, RSW, FM offers nutrition and cooking educational activities. Visit www.forksmart.org for more information.
Community Events: click to read more!
London PH Support Group Meeting, Feb. 11 (London, ON).
Join the London PH Support Group's monthly meetings.
The Royal Scots’ 10 and 20-Mile March for PH in Honour of Everleigh Pierce, March 4 (Mosa Township, ON).
Commemorative march benefitting PHA Canada.
London PH Support Group Meeting, March 11 (London, ON).
Join the London PH Support Group's monthly meeting, with special guest Laura Greene R.N., Supervisor Clinical Services, Remodulin Patient Support Program, McKesson Canada.
London PH Support Group Meeting, Apr. 8 (London, ON).
Join the London PH Support Group's monthly meeting, with special guest Janice Dinsmore Czechowsky, Trauma and Counseling Specialist.
Prevent and Reverse Heart Disease, Apr. 28 (Calgary, AB).
Seminar on nutrition and heart disease by Dr. Caldwell Esselstyn Jr., M.D presented by Heart Calgary.
International CTEPH Conference 2017, June 9-10 (Leuven, Belgium).
This international medical conference will cover various aspects of disease management, medical therapy, and interventional treatment.
Eastern Regional PH Symposium
, Oct. 13-14 (Toronto, ON).
Mark your calendars for PHA Canada’s 2017 regional educational and networking event.
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!