The Pulmonary Hypertension Society of Canada (PHSC), was founded in 1999 by Ontario lawyer Leon Paroian, a few years after his daughter Sherri Lynn Oliver was diagnosed with pulmonary hypertension (PH).
Leon became a champion for those affected by PH and continued, through PHSC, to raise funds for research in the field of pulmonary hypertension even after PH took the lives of his daughter and then his wife.
While Leon’s efforts focused around fundraising and funding research, another PH movement was taking place throughout Canada. In regions and provinces across the country, patients, family members, caregivers and friends were forming support groups and provincial societies for PH.
In 2006, provincial leaders of PH groups began discussing the need for a strong, unified national organization: one which would unite the regional groups and become a stronghold for PH sufferers across Canada. At the time, Leon was suffering through illness of his own. In 2008, he decided that new leadership was necessary to make the dream of a strong national organization a reality.
Leon Paroian and BCPHS founding member, Liz McCall.
On April 1, 2008, the Board of PHSC, including Leon, resigned their posts and a new Canada-wide Board of Trustees was elected. The Board elected Darren Bell as president and moved the association’s headquarters to Vancouver BC. Sadly, shortly thereafter on May 10, 2008, Leon passed away after having battled diabetes and prostate cancer. Leon was a true champion for the cause of PH, and the fundraising in which he was so successful helped to put Canadian research in PH on the worldwide map.
With a new Board and new mandate, and in order to better showcase its place amongst a worldwide PH movement, PHSC was renamed the Pulmonary Hypertension Association of Canada (PHA Canada). PHA strives to bring together patients, their caregivers and families as well as medical professionals to form a strong united community that is, together, working towards a cure for PH.
Although still a very young organization, PHA Canada has already made tremendous strides. In May 2008, an initiative was introduced to the House of Commons by Darren Bell’s father, Don Bell, MP North Vancouver. This private members motion called M426 was brought forth in the House of Commons and received the support of all parties, with the exception of the Bloc Quebecois, which cited a need for special recognition for Quebec. The motion calls on the government to “respond specifically to the challenges faced by Canadians with rare diseases and disorders”. PHA Canada also had some major victories advocating in the province of Ontario, where Ministry of Health policies on PH therapies threatened the lives of patients in that province through the proposed implementation of step therapy.
In the several years since the mandate of the organization was expanded, PHA Canada has seen tremendous growth, with new support groups and Chapters being formed and growing. PHA Canada has held 3 National Conferences: in Montreal (2009), in Toronto (2011), and Ottawa (2013), with our 4th National Conference slated for 2015 in Montreal. This biennial event is typically attended by over 250 attendees, and continues to grow every other year. Successful media campaigns have raised public awareness of the disease, and we continue to raise awareness and provide the tools and encouragement for all PHers to become involved in this advocacy work.
Most importantly, PHA Canada has witnessed the PH community unite like never before. We live in an exciting time of hope and possibility, with many research developments on the horizon for PH. PHA Canada is proud to be an agent in uniting all Canadians in the fight again PH.
PHA Canada’s goal is to act on behalf of and alongside all Canadians affected by pulmonary hypertension.
We strive for this organization to represent Canadians from every region of the country, so that no matter where someone lives, they can get the support they need. As we continue to grow and develop, we urge you to become involved in the fight and get in touch to find out the many ways that you can help.