Copy
PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA
PHA Canada eNewsletter: Vol.7 #2 February 2017 
 


On February 28th, we celebrated Rare Disease Day by re-launching #TakeActionPAH campaign site. 

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, which is only funded in Quebec. We believe that all pulmonary arterial hypertension (PAH) patients – no matter their financial situation, province of residence, or private insurance coverage – should have access to optimal treatment. Because PAH is a highly individualized disease, specialized PAH physicians require the flexibility to prescribe any Health Canada-approved treatment they believe will result in the best possible short and long-term outcomes for their patients.
 
We have joined forces with Scleroderma Canada, Fondation HTAPQ, and Sclérodermie Québec to advocate for publicly funded access to these new Health Canada-approved treatments so that PAH specialists are able to exercise their individual clinical judgment, which is essential to the proper treatment of PAH.
 
We need your help as we continue our fight for publically funded access to all approved PAH treatments. Visit www.TakeActionPAH.ca for updates such as:  Visit www.takeactionpah.ca to learn more, send an email to your provincial representatives, and tweet at decision makers! All our tools have been updated, so if you’ve participated in this campaign in the past, we encourage you to #TakeActionPAH again.
 
We’re here to help! Contact us if you need additional information and support, particularly if you’re planning a meeting with your provincial representative (takeactionpah@phacanada.ca or 1-877-774-2226 x101).
 
We are also 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 (jmyrah@phacanada.ca or 1-877-774-2226 x101) to share your story. 

Get Ready for World PH Day 2017!
Friday, May 5, 2017, marks the 6th annual World PH Day, a global event dedicated to raising awareness of PH and celebrating PHighters worldwide. Spring is right around the corner; we invite you to plan ahead and participate in this global #PHAwareness event. See below for ways you can get involved.
  
Help Us Paint Canada Purple
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 make 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. 
 
Organize a Special Events
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. We have a limited amount of money available to support events that will benefit the PH community. 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 jmyrah@phacanada.ca or 1-877-774-2226 x101.

Order PH Educational Materials and Purchase PH Awareness Items
We have everything you need to make a big periwinkle splash for World PH Day! Visit our online store to order free educational materials and purchase PH awareness swag. PHA Canada’s new PH awareness flag is also is available for our members to use at events or hoist in their communities. Contact our Communications and Engagement Manager, Mariane Bourcheix-Laporte, at mblaporte@phacanada.ca to borrow one of our flags.

Save the Date: Eastern Regional PH Symposium!
 
Mark your calendars for our first Eastern Regional PH Symposium, which will take place October 13-14, 2017 at the Westin Prince Hotel in Toronto. Join us for Friday night for a special welcome reception and Saturday for a full day of educational sessions featuring medical experts and your PH peers. We are happy to announce that PHighters living in, or east of Manitoba (within Canada) will be eligible to apply for travel scholarships – stay tuned for more details.
 
More information on this event will be announced in the coming months, including further details on scholarships, registration, volunteer opportunities, and program updates. Stay up-to-date by joining the event on Facebook or visiting our website regularly.
 
If you have any questions, are interested in getting involved, or have presentation topics to suggest, please contact our Executive Director, Jamie Myrah, at jmyrah@phacanada.ca
Spring 2017 Connections Mailing
It’s the time of the year when we’re busy getting ready to mail out the spring issue of Connections, our bi-annual community magazine. If you’re a current member, you’ll receive a dose of periwinkle power in your mailbox in April.
 
If you are unsure of your membership status, please contact our Administrative Coordinator, Ethel Abiera at eabiera@phacanada.ca or 1-877-774-2226 x103. 

February has been a particularly busy month for us at PHA Canada! We have produced lots of new resources, which we are very excited to share with the community.
 
New & Improved New to PH Kits
We have given our New to PH kits a much-needed update with new resources, developed in collaboration with the Canadian PH Professionals Network (CPHPN), up-to-date information, and a new look. The kits are now available in three versions:
  • New to Pulmonary Arterial Hypertension (PAH)
  • New to Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
  • New to Pediatric Pulmonary Arterial Hypertension (PAH)
The kits contain useful information to help new patients and caregivers acquaint themselves with PH, adjust to their new reality, get introduced to the PH Community, and learn more about the resources available through PHA Canada. Our New to PH kits are distributed to newly diagnosed patients through PH clinics and can be ordered online.
 
Electronic versions of the resources included in the kits can be downloaded on our website at www.phacanada.ca/electronic-materials. Take a look at our new resource sheets: Tips for Staying Active and Preventing Fatigue
Our Pediatrics Committee has also been busy developing a new resource for families of children with PH. Tips for Staying Active and Preventing Fatigue features tips and tricks to help little PHighters live as normally as possible while conserving their energy. This new resource is accessible online at www.phacanada.ca/pediatrics along with other useful tools for families.





First Canadian Electrophysiology Laboratory Equipped with Robotic Magnetic Navigation System Dedicated to Patients with Congenital Heart Diseases - The Montreal Heart Institute is proud to announce the opening of the very first electrophysiology laboratory (EP Lab) equipped with robotic and magnetic navigation and dedicated to congenital heart diseases in Canada.
International Diagnosis and Management Practices for CTEPH Inadequate, Study Finds - An international study to assess clinical practices in the diagnosis and management of patients with chronic thromboembolic pulmonary hypertension (CTEPH) found several differences in CTEPH management among regions, but also a gap between guideline procedures and real-life practice of diagnosis and treatment.
Merryman wins $6M to address heart disease with arthritis drug, fund other research - A Vanderbilt biomedical engineering professor has garnered $6 million total in grants to determine how to treat heart valve disease, pulmonary hypertension and heart failure using drugs originally developed for rheumatoid arthritis and applying the lessons learned from failed weight loss drugs.

Muligatawny Soup
Contributed by: Kate McGoey-Smith, DipNrsg, MSW, RSW, FM, Certified Food for Life Instructor. Courtesy of Fork Smart.

This delicately seasoned creamy vegetable soup is the perfect remedy to the “winter blues.” Warm up your body and soul with a cup of this exotic recipe!
 
Ingredients:

  • Medium red onion, diced
  • 1 red pepper, diced
  • 2 medium carrots, diced
  • 2 celery sticks, diced
  • 2 medium white potatoes, diced
  • 3 tomatoes, diced
  • 1 tsp. mixed Indian spices (e.g. Kitchen King brand)
  • 1 tbs. garam masala spice mix
  • 1 tsp. chili powder
  • 2 tbs. lemon juice
  • 1 cup unsweetened almond milk mixed with 1 tsp. coconut extract
  • 4 cups of water
Directions:
  • Place all ingredients in a large pot, stir so liquid and spices are fully blended. Bring to a boil, then simmer on medium heat until all vegetables are fork-tender.
  • Blend thoroughly until soup has a creamy texture.
  • Enjoy!

Nutritional information (for total soup contents): 2.5 g of fat; 239 mg of sodium.

The Pulse 

  
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.

Dinner Party to Recognize Local PH Patients and Families, April 1 (Russell, ON). Fundraiser benefitting PHA Canada and PH research at the Ottawa Heart Institute.
 
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.

ATS International Conference 2017, May 19-24 (Washington, DC). International medical conference organized by the American Thoracic Society.

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.

PHA Canada Run/Walk for Research, June 10 (Ajax, ON). Fundraiser benefitting PHA Canada.

GolPH for PH, July 13 (Mississauga, ON). Fundraiser benefitting PHA Canada.

Eastern Regional PH Symposium, Oct. 13-14 (Toronto, ON). Mark your calendars for PHA Canada’s 2017 regional educational and networking event. 
 
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

PH advocates Jeannie Tom and Joan Paulin with MPP Michael Harris at Queen's Park for Rare Disease Day.
 
 
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 mblaporte@phacanada.ca 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! 
Unsubscribe 

Forward this email to a friend
Email Marketing Powered by Mailchimp