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Eternal PHriends of PHA Canada
In 2018, we were thrilled to recognize the inaugural "
Eternal PHriends of PHA Canada
". This distinct honour was bestowed upon 11 special individuals whose dedication, passion, and hard work has been essential to the establishment of PHA Canada and the unification of Canada’s PH community.
Back to Our History Overview
Following the PAH diagnosis of his son Dylan in 1998, Darren Bell became increasingly more engaged in advocating for and furthering the interests of the PH community in Canada. By 2006, Darren was among the key leaders in the PH community to identify the need for a broader national organization, one that would unite the thousands of Canadians affected by PH. He was very involved in the meetings that took place during international events and worked closely alongside his fellow Western Canadian PHriend Liz McCall to move things forward in areas of community support and access to treatment. After the loss of his son in 2007, Darren joined representatives from across the country to form the original Board of Directors for a new national organization—the Pulmonary Hypertension Association of Canada—of which he became the first elected President in 2008.
His work with the organization has been instrumental in bringing together groups from across Canada. Driven by a strong desire to offer more timely support to patients and more equitable access to life-saving treatments, Darren has always put the needs of the community ahead of his own. As a fellow PH parent, his voice has provided families with hope, courage, and the strength to keep fighting and raising awareness of pulmonary hypertension within their local communities.
Darren Bell has continuously provided a strong and loud voice. Without his influence and knowledge, PHA Canada would not be where it is now. As a leader and hero of the PH community in Canada, we are all eternally grateful for his efforts and contributions to empowering Canadians affected by this disease.
Lynda Beriault was a true pioneer in the PH community. After receiving her PH diagnosis, she became one of the very first PH patients in Canada to go on Flolan®, participating in the clinical trials that would one day make the first treatment for PH available to patients across the country. In the early 1990s—when very little was known about the disease, and a complete lack of support and information would leave PH patients feeling orphaned and alone—Lynda started one of Canada’s first patient support groups, in collaboration with the Montreal PH clinic at the Jewish General Hospital (led by Dr. David Langleben). Together, Lynda and Dr. Langleben wanted to provide much needed support to patients and their families. Lynda was also acutely aware of how difficult it was for French patients to get information on the disease and advocated throughout her PH journey for more French support everywhere possible. This made Lynda an essential addition to the Founding Board of Directors of PHA Canada in 2008, where she continued to represent the French Canadian community on a national scale.
Lynda’s ability to develop close relationships with people made her incredibly unique and essential to getting PHA Canada to where it is today. Her love for creating links between members of the PH community helped immensely in the process of unifying the PHamily, and ultimately cultivating a national collaboration to better understand and combat the disease together.
Lynda was an incredibly hard worker and helped to improve the lives of patients all across Canada. She was determined to ensure that everyone got equal access to treatment and resources so that they could have the best quality of care. Her help and influence were invaluable to empowering the PH community in Canada and we are eternally grateful for the work she did both for the PH community and as part of PHA Canada’s Board of Directors.
Lynn-Marie Cox was first diagnosed with PAH in 1998, at a time when information about PH was not widely known. It took until 1999 for her to start on Flolan®, the only PH treatment that was available at the time. After a couple of years experiencing first-hand how isolating the disease could be, Lynn-Marie set out to make sure other people with PH would have the resources and support they needed to thrive. This led to her founding the Edmonton PAH Society where she took care of most of the administrative work, including applying for charitable status for the Society. She spoke to and peer counselled many local PH patients and caregivers. Even the staff at the hospital would give new patients who were looking for peer support her number. While continuing this work, she eventually joined PHA Canada’s Board of Directors in 2011 and served as the Board’s Secretary for many years.
Lynn-Marie became very heavily involved on behalf of the PHighters she supported. She was often the one responsible for organizing fundraisers and galas in support of members of the community. She worked hard to ensure that everyone had someone to talk to and felt supported throughout their PH journey. The work that she did was truly invaluable and she helped to build awareness of PH both at home in Edmonton and throughout the rest of Canada.
Lynn-Marie gave herself completely to the PH community in order to provide aid to anyone who needed help. She was a “mother” of PH support, providing unconditional love and understanding to those around her. If you needed a helping hand or someone to talk to, Lynn-Marie was there. And for that, the entire Canadian PH community is eternally grateful.
Ever since finding out her daughter had PH, Ruth has been a strong force in furthering the interests of the national PH community. It wasn’t long after the diagnosis in 2009 that Ruth joined Toronto’s PH support group, which she later co-led for over eight years without ever missing a meeting. Ruth has worked hard alongside the PH community, advocating tirelessly for better and more equal access to treatment as well as greater awareness. She helped organize the Let me Breathe fundraiser for five years with her brother Paul and travelled around the Toronto area assisting at various awareness events to help ensure more people knew about the disease. She was also eager to help grow November Awareness Month year after year, through proclamation requests and events all around the province. Ruth was so committed to providing people with information about PH that she would visit doctors in her local community to encourage earlier diagnosis, one of PHA Canada’s key priorities. Her advocacy work led her to speak out at Queen’s Park to help improve access to PAH medication, ultimately leading her to become a member of the Board of Directors of PHA Canada, for which she served as liaison to the organization’s first cohort of Ambassadors.
Ruth has not only worked hard to advocate for PH patients, she has—over the years—been truly committed to making sure newly diagnosed PH patients and their caregivers have all the support and information she can provide. She has dedicated herself to ensuring PH patients and their families receive a better quality of life.
Ruth’s hard work and commitment has been incredibly beneficial to everyone in the PH community. Her work as an advocate, educator, support group leader, and Board Member has left a lasting positive impact on Canada’s PH community. We are extremely proud of and grateful for all the work Ruth has done to improve the lives of those affected by PH.
In 2003—following the PH diagnosis of her oldest son Braden—Jennifer began her journey helping Canadians affected by this illness. Her determination first grew out of the lack of available resources, support, and information her own family experienced. In order to learn as much as she could about the disease and help push for progress in Canada, she became an international PH Ambassador of PHA (US). Through this, she gained the expertise and motivation to do more for the PH community in Canada and by 2005 founded the New Brunswick Pulmonary Hypertension Society (NBPHS). By 2008, Jennifer had grown close to her national PHriends and ultimately joined the Founding Board of Directors of PHA Canada. She later went on to become PHA Canada’s second part-time employee, working as Regional Coordinator until December 2013, when she stepped back into her position as a Board Director.
Jennifer’s hard work doing local outreach and raising awareness of PH has been incredibly valuable for everyone in the PH community, especially in the pediatric community. She became the first parent Chair of the Pediatric Committee in 2012 and was responsible for bringing PH families together through fundraising and community events. She worked to develop a support network for pediatric PH families at a time when there wasn’t one. Her work has provided families with hope and support throughout their PH journeys.
Despite being busy raising three boys and running her own business, Jennifer has continuously worked to drive progress for the Canadian PH community. We are eternally grateful for the support she has provided PH parents all across the country, and for her contributions to making PHA Canada the truly national association we have become.
Orphan diseases were always a part of Rita’s life. She was born with an extremely rare type of heart-lung malformation known as scimitar syndrome, which unfortunately led to the development of her pulmonary hypertension. Despite this, her personal motto was always “not to let the things she couldn’t do prevent her from doing the things she could.” Rita was instrumental in organizing the initial PH Walk at the Jewish General Hospital, a fundraiser that has now run annually for seven consecutive years during November Awareness Month. She worked closely with the PH clinic to organize patient support group meetings regularly throughout the year, gaging patient response to the topics that were the most sought after and of interest for discussion. And through her continued hard work and commitment to the community, Rita became an essential member of both PHA Canada and Quebec’s provincial patient association, Fondation HTAPQ.
Rita was a kind and generous individual who was dedicated to her work with the PH community. She wanted the absolute best for her fellow patients and worked tirelessly to raise awareness of PH. Rita was always there for her fellow community members and her work running patient support groups was invaluable to her peers. She served as a conduit between her PH clinic and their patients, volunteering countless hours to helping the clinic improve their ability to provide support to patients.
Rita was a fantastic asset both to PHA Canada and Fondation HTAPQ and the support that she provided to the PH community is still apparent today. She inspired other members of the community with her work ethic and passion. Through the incredible support she provided to her community, she improved the lives of countless PH patients all across Canada. We appreciate all the work that Rita did for the PH community and will forever be grateful for the impact she made on our PHamily.
Angie Knott’s involvement with the PH community dates back to early 2006 when she began her work as the International Program Manager for the Pulmonary Hypertension Association in the United States. It was during this time that she gathered the knowledge and experience that would—by mid-2008—drive her decision to return home to Vancouver and help the newly established Board of Directors of PHA Canada set down the foundations of a stronger, more unified Canadian PH community. Angie worked as the National Manager for PHA Canada from 2008 to 2015. During those very early years, Angie worked alone in a room filled with boxes and simply started building relationships with the different provincial PH groups that had been set up. With time, she grew close to community members on both ends of the country, working to bring everyone together into one unified whole. She also spearheaded the movement to get PHA Canada accredited by Imagine Canada, which in turn helped develop PHA Canada into a flourishing organization. Angie is responsible for laying much of the groundwork that has allowed PHA Canada to exist at the level that it does now.
Angie is an incredibly hardworking and passionate person whose determination to establish PHA Canada as a credible and effective non-profit organization paved the way to where we are today. Equally, her dedication to the betterment of the lives of those affected by PH shone through in the various programs she spearheaded: from education and awareness campaigns, to national conferences and more.
The incredible work that Angie has done for PHA Canada serves as an inspiration for everyone in the community. She is a tireless advocate who built PHA Canada from the ground up. Her work has allowed for PH patients all across the country to receive better treatment and quality of life. We thank her for everything she has done for the PH community and the incredible impact that she has had on the lives of countless individuals
Dr. Sanjay Mehta
Dr. Sanjay Mehta
Since coming to Canada from India at four-years-old, Dr. Mehta has become a pioneer in PH research and treatment in Canada. Starting in 1989—following the completion of his fellowship in Respiratory Medicine at McGill University in Montreal (1991-1994) and Harvard University in Boston (1994-1996)—he straightaway got involved in both PH research and the frontline care of PH patients. It did not take long for him to notice the severe lack of organized care for PH patients in London and Southwest Ontario and so—as soon as 1997, one year after his fellowship—Dr. Mehta started the Southwest Ontario PH Clinic. Since then, Dr. Mehta has become a leading PH specialist in the country, conducting research studies on new medications and methods of assessing those affected by the illness, and—most notably—the development of PH clinical practice guidelines for Canada, the first of its kind for the country. Dr. Mehta was also the very first Medical Advisor to sit on PHA Canada’s Founding Board of Directors. He became the Chair in September of 2013, a role he occupied until 2018 .
Dr. Mehta is a tireless advocate for patients, working with PHA Canada and other organizations on PH education, ensuring better and equal access to necessary treatments, and providing leadership to the development of our early diagnosis campaign: Sometimes It’s PH. His ability to connect the PH community with the medical professionals who care for them makes an immense impact on their quality of life, and is helping to shape the future of PH in Canada.
In Dr. Mehta, patients and caregivers facing this incurable disease have an advocate who is compassionate and committed to providing the ultimate level of care. We are eternally grateful for his continued dedication to empowering and bettering the lives of all Canadians affected by pulmonary hypertension.
At the young age of 30, Elizabeth (Liz) McCall was diagnosed with an atrial septal defect that—by 1999—led to surgery and ultimately, a PH diagnosis. But through all of it, she never let her health issues keep her down. Despite being faced with a life-threatening illness, Liz fought back. She took every step possible to spread the word about PH and to support the PH community in any way possible. It was while searching for help coping with her “new normal” that Liz discovered the lack of Canadian resources and support available to patients like herself. That is why—barely two years after her diagnosis—Liz started the British Columbia PH Society (BCPHS). She wanted to bring together the local PH community to facilitate discussion and direct contact between caregivers, patients, drug companies, and pharmacies. She also went on to become a Founding Director of PHA Canada in 2008.
Liz provided invaluable support to the PH community throughout her life. She was instrumental in the development of support groups for people with PH in BC and throughout the country. She worked hard to help raise awareness of PH and ensure patients knew they were not alone. Liz also saw that November was celebrated as PH Awareness Month all around the country, a significant milestone in the campaign to raise awareness of PH. Without Liz’s dedication and hard work, PHA Canada would not be where it is right now.
Liz McCall worked tirelessly for the PH community: it was her goal that no patient would face this illness alone. Her dream was to one day see a united Canadian community, in which everyone living with PH could receive the support they needed. While she may no longer be with us, Liz’s legacy lives on eternally and her incredible contributions to the Canadian PH community will never be forgotten.
The Paroian Family
The Paroian Family
The contribution of the Paroian Family is an important one to the beginnings of our community. In 1997—following the PH diagnosis of their daughter Sherry—the Paroian Family were baffled at the complete lack of support and information that was available to those affected by this rare, incurable disease. This drove Leon Paroian—Sherry’s father and a well-established Ontario lawyer with strong connections in his local community—to make a stand and demand that things improve. This began with the founding of the PH Society of Ontario (PHSO) and the PH Society of Canada (PHSC), both of which had the set goal of finding a cure for PH. Through hard work and determination, the Paroian Family raised an incredible $2 million for Canadian PH Research, much of which helped fund one of the most important PH research trials currently underway today: the gene-therapy studies of Dr. Duncan Stewart.
Unfortunately, Sherry did later pass away from PH, leaving the family devastated. Leon realized he would need to step down from his leadership position at PHSO and PHSC to take care of his family and his own health. By this point, the need to unify the various PH groups spread out across the country has been identified. In 2008, Leon resigned from his organizations to give way to a new national PH association: the Pulmonary Hypertension Association of Canada.
The Paroian Family’s commitment to the Canadian PHamily continues to echo today, with the generous financial contributions of Leon and Sandra’s son Phil. Phil’s initial donation launched PHA Canada’s research scholarship program in 2016, and with additional community support and fundraising since then, we have been able to fund four such scholarships in only two years. Through this initiative, we continue to honour the legacy of one of the Founding Fathers of our community. We also commit to his vision of supporting research in order to further improve the lives of all Canadians affected by PH, and to maybe one day discover the cure that Leon so desperately wanted.
Sharon Proudfoot is a Founding Director of PHA Canada and served as Treasurer of the Association from its inception until 2011. However, her work and dedication to the PH community began well before this period of time. She began her work with the PH community in 2000, just over one year from her diagnosis with the disease. She started the first ever Calgary PH support group out of a need to unite the local community and make sure no one lived through this disease alone. She became a dedicated international member of PHA US, where she was able to make new PHriends in the community and widen her connections to the Canadian PHamily. From there, she was involved with a number of fundraising initiatives—such as for the PH Greatest Needs Fund—and joined the Founding Directors of PHA Canada in their vision to create a more united Canadian PH community that would be able to support and help one another.
Sharon—as a patient—was always incredibly focused on ensuring the absolute best for the members of the PH community. Her sharp and pragmatic approach was essential in the process of building PHA Canada from the ground up, and we could not have become the organization we are today without her expertise and hard work.
Sharon played an integral part in the executive search for PHA Canada’s first Executive Director in 2015. Since then, despite stepping down from the Board in 2017, she has continued to make herself available to help wherever she can and continues to support PH patients locally through her lunch support group in Vernon, BC. We are eternally grateful for Sharon’s contribution to uniting the PH community, and are both proud and honoured to name her as one of the Eternal PHriends of PHA Canada.