PHA Canada eNewsletter: Vol.5 #4 Mar 2015
The 20 Mile March for PH!
Many of us can’t imagine walking even a few miles, let alone 20. We were honoured to hear about a 20 Mile March for PH initiated by the Royal Scots, who were inspired by 4 year old PHighter Everleigh Pierce. The March was held on February 28th and had 11 marchers, of which 7 completed the entire distance of 20 miles. They received wonderful support from the local community, who provided coffee and a hot meal to get the Royal Scots through the entire distance. The March raised well over $1000 for PHA Canada programs. We are humbled by their efforts and so grateful for this outpouring of support to our PH community. A special thanks to Glenn Stott for coordinating this fundraiser!
Conference Countdown: WHO will be there?
Conference Registration has been EXTENDED until April 7th to allow for additional registrations! Our 4th national gathering is just four weeks away, and we’re getting excited about the exciting speakers and PHriends that we’ll be seeing in Montreal. Some of them are:
Jeannette Morrill - Jeannette has lived with PH for an astounding 38 years. As our keynote speaker, she will share her story of ups and downs and surviving PH at a time when no medication was available.
Cleve Ziegler – Cleve is an OBGYN who works with the Jewish General Hospital’s PH clinic. Cleve responds to all issues relating to PH and pregnancy, contraception and other reproductive concerns. This year’s Conference is the very first to feature an expert in reproductive health.
Adam Kingz – Adam has been through 2 double lung transplants and lived to tell the tale. This incredible father and husband will be speaking in the ‘Transplant’ session and ‘Navigating relationships, friendships and dating’.
Heather Tulloch - Heather is a clinical and rehabilitation Psychologist at the University of Ottawa Heart Institute. She supports the mental health of cardiac patients and was a presenter at our 2013 Conference.
Rana Awdish - Dr. Awdish’s research focuses on exercise for PH, PH in liver disease and transplant, and improving communication in health care. She has also created a modified yoga program and app for PH patients. While Rana was unable to make it to our 2013 Conference due to a health issue, she is excited to conduct sessions on chair yoga and breathing at our Conference this year!
Sean Wyman – Sean was diagnosed with PH as a teenager and told that he didn’t have long to live. He has since defied the odds as a support group leader, medical school student and creator of the cartoon series ‘Lips Painted Blue’ for children living with PH.
To see who else will be attending Conference, make sure to check out our VIDEOS page, as well as the Conference Agenda. Register today at phacanada.ca/2015conference.
8th International Conference on Neonatal and Childhood Pulmonary Vascular Disease
Conference Report from Sarah Platnar
"The 8th International Conference took place in San Francisco from March 27-28. Janette Reyes, Nurse Practitioner from the Hospital for Sick Children organized and attended both the nursing and family sessions. As the mother of nine year old PH patient Isabelle, I presented a session with Isabelle (via skype from Pickering) which focused on igniting change through PH awareness. The Family Session of the Conference focused on how patients and families were increasing awareness of PH. The Conference was a very positive experience and it was wonderful for all of the families affected by PH to connect."
Paint Canada Purple for World PH Day
In only a month’s time, Canada will be lit in purple for World PH Day! We wish to recognize Quebec PH Foundation president Denis Cormier who has worked with members to request monuments in their towns. As a result, the Olympic Tower in Montreal and the streets and electronic billboards of Victoriaville will be lit in purple! PHA Canada Ambassadors and other members have also been working on other monuments, and we have also received confirmations that Vancouver’s BC Place and Science World, and Toronto’s CN Tower will also glow in periwinkle for World PH Day!
Help us light all the major monuments in every Canadian city on May 5th: visit phacanada.ca/paintcanadapurple to learn more!
A Blueprint for Better Breathing – Of the four chronic diseases responsible for four in five deaths in Ontario, lung disease is the only one without a dedicated province-wide strategy.
COPD Patients with PH are More Prone to Co-Morbidities - Researchers at the Cairo University in Egypt recently reported that patients with chronic obstructive pulmonary disease (COPD) can also develop co-morbidities as pulmonary hypertension and cardiac alterations.
Canadians with rare, complex and fatal lung disease fearful of one-size-fits-all approach to treatment - Canadians affected by PAH are concerned about recent CADTH recommendations to restrict patients' access to treatment.
Macitentan Significantly Reduces PAH-Related Hospitalization - In a new report, researchers describe the benefits of a Macitentan 10 mg dose in reducing the risk for hospitalization in patients with PAH.
In this issue of the Research Corner, we will focus on the genetics and inheritance of Pulmonary Arterial Hypertension (PAH).
According to the most recent world health organization clinical classification, PAH divides into 3 categories. It can be:
Can specific mutations lead to PAH?
- idiopathic (with an unknown cause)
- heritable (passed down in the family, previously known as familial)
- associated (appears alongside another disorder). Genes functioning in an abnormal fashion can participate greatly in PAH.
In 1997, scientists were able to locate mutations in a specific gene that was common in families that develop PAH. The gene, called BMPR2, is part of a larger signaling pathway that regulates survival and growth of endothelial cells (the cells lining the inside of the blood vessels). CLICK to read more.
Introducing our Ambassadors: Danush
“I am a PH parent and caregiver to my youngest son Riley, who was diagnosed with idiopathic PH in July 2012. I’m married to Alistair and besides Riley, I have an older son named Kody. I’m currently off work in order to give Riley all the care he needs, but I’m passionate about creating awareness of PH in my surrounding community and take part in fundraising for a variety of charities. I’m honoured to be an Ambassador with PHA Canada.”
Ingredients and steps:
- 1 cauliflower
- 1 ½ C Nutritional Yeast
- 2 Tbsp dried Basil
- 2 Tbsp dried oregano
- 1 12 oz can of no-salt added kernel corn (drained) or 1 ½ C thawed (from frozen) kernel corn (optional)
- 1 box of baby spinach – steam in microwave, drain and bend in food processor until finely chopped
- 1 large jar of ready-made salt-free tomato sauce
- 1 bunch fresh basil leaves
Steam cauliflower in microwave for 7 minutes. Place in food processor and blend until mashed potato consistency. Place in bowl and add nutritional yeast, basil and oregano. Blend together and add corn and spinach. Stir entire mixture well and hand stuff in ready-to- bake cannelloni shells. Place on large tomato sauce-lined Pyrex lasagna dish. Pour remaining tomato sauce over stuffed shells and sprinkle with fresh basil leaves. Cover with foil and Bake at 375F for 50 minutes. Remove foil during last 15 minutes of baking. Enjoy!
Meet our Knowledge Philanthropists
This month’s Knowledge Philanthropist is Kate, a professional biomedical illustrator who lent her skills to creating a stunning new flyer for PHA Canada.
“I am a professional biomedical visual communicator; I create visuals that help better communicate medical and science topics. I came to work in the small and very specialized field of Biomedical Communications, after working as a biologist, studying fine arts at Emily Carr University and later completing Master of Science in Biomedical Communications from the University of Toronto. Improving science education and research is not only something I do for work, but also something I feel very passionate about.
I knew about PH before volunteering, but didn’t know that there was a Canadian organization that helps support people living with PH and raises awareness through outreach programs and educational resources, such as the brochure I worked on. I chose to volunteer with PHA Canada because I saw this as a great opportunity to do something I love while helping the pulmonary hypertension community. For PHA Canada, I produced 4 anatomical illustrations for use in an informational brochure on PH. I’m so glad I was able to use my professional skills for the benefit of this community.”
Apr 25: Transplant Trot Calgary!
Confederation Park 55+ Activity Centre, 10:00 AM - 2:00 PM
Help us to celebrate life after transplant for organ and tissue recipients and increase organ and tissue donation awareness in Alberta and across Canada!
May 02: London Transplant Trot-in memory of Leslie Petter
Gibbons Park, All Day
You are invited to join transplant recipients, donors and donor families, friends, families and supporters as we celebrate the success of organ and tissue donation in one of London’s largest awareness events!
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!