The Toronto Chapter was formed by a volunteer group of patients, families and caregivers in the Fall of 2008. Patients found each other through a pulmonary hypertension group on Facebook and got together at a local coffee shop. They shared and exchanged stories of how PH has affected their lives and how they deal with it. It was amazing to see how each person had a different story yet they could still relate to how each other felt. Strong bonds were immediately formed.
Since there had been no local support for people affected by PH in the Greater Toronto Area, they decided to formalize a support group to help fight back against the disease with the help of the national organization – PHA Canada. Today, the support group meets on a regular basis.
With its the tremendous success, the Toronto support group became PHA Canada’s first official chapter. Aside from providing support to each other, the Toronto Chapter plans to educate and fundraise to expand awareness of the disease to the public and healthcare professionals.
Frank is a co-founder of the Toronto Chapter and currently serves as the President of PHA Canada. He first found out about Pulmonary Hypertension when his good friend Loretta was diagnosed in 2006. He refuses to let her deal with the disease without as much support as possible and has become extremely passionate about building up the local PH community. He has found a lot of strength and support through the many new friends he has met from the Toronto Chapter. He’s inspired everyday by the powerful bonds that can be formed by bringing together people who are going through the same adversity. He’s constantly thinking of new ways to bring together people affected by PH and help them overcome the disease. So if you have any cool ideas let him know! He can be reached at fpoon[at]phacanada.ca.
Loretta is a co-leader/co-founder of the Toronto Chapter. She was diagnosed with PH in August 2006, after experiencing severe shortness of breath, chest pains and fatigue. She is constantly reminded that she has PH, as it affects every aspect of her life. With the help of her family, friends, and especially the support group, she has a more positive outlook and is motivated to improve her quality of life. She continues to work full-time and tries to lead a normal life as much as possible living in the moment. She is so glad to have met the people who understand and can relate to her situation. She hopes that the support group will benefit others the way it has for her and continues to help spread awareness for this terrible disease. She can be reached at loretta[at]phatoronto.ca.
Ruth, a retired Registered Nurse, is the mother of Emily who was diagnosed with PH in January 2007. She joined the Toronto Chapter of PHA Canada in 2008 along with her husband Edward, so they could learn more about PH, and how to support their daughter. Ruth is now an active member of the Fund Development and Awareness Committee. She is also a co-leader of the PH support group. Ruth is always looking for opportunities to promote awareness of this often misdiagnosed, rare and life threatening disease, so other PH patients won’t have to spend months or sometimes years without the correct diagnosis and appropriate, life extending treatment. Sharing with other patients and caregivers has given Ruth and her family much support and hope for their daughter’s future. she can be reached at ruth[at]phatoronto.ca.