About Us
Thalassemia Foundation of Canada is a volunteer-run charitable organization established in 1982 as a support group and eventually incorporated as a Canadian charity in 1988. Our mission is to support and fund thalassemia scientific research, treatment, patient services, public awareness and education.
Our Goals
- Provide patients and caregivers with accurate, up-to-date information on thalassemia research and treatment
- Help patients and families navigate the health care system and advocate for themselves and others
- Offer practical resources and support to the thalassemia community
- Advance research and innovation in thalassemia treatment and care
Team
Our team is made up of individuals with valuable skills and lived experiences (primarily patients and caregivers) who represent the thalassemia community across Canada – with board members from major thalassemia centres.
Board Executives
Josephine Sirna
President
Josephine has a M.Sc. in Laboratory Medicine and Pathobiology and is a long-time volunteer with TFC. She is a transfusion-dependent thalassemia patient who seeks to improve the lives of others living with thalassemia. As a strong advocate for the thalassemia community, Josie led the successful effort to include thalassemia patients in Canada’s Hepatitis C compensation plan and was an inaugural member of Canadian Blood Services’ community liaison committee. She also is a board member of the Network of Rare Blood Disorders.
Bessie Calabria
Immediate Past President
Bessie Calabria, a university graduate and seasoned corporate leader, is a dedicated advocate for thalassemia patients, particularly as a beta-thalassemia major patient herself. Since 2006, she has volunteered on the Thalassemia Foundation of Canada (TFC) Board of Directors, serving in various roles such as Trustee, Vice President, and current President. Bessie also serves on the Thalassemia International Federation (TIF) Board of Directors. Bessie’s utmost passion lies in patient advocacy and education. She firmly believes in every patient’s right to safe blood, access to comprehensive care and affordable treatment, advocating for these principles on a national and global scale. In her personal life, Bessie enjoys travel, music, exploring new cuisines and spending time with her family and friends.
Christina Marra
Treasurer
Christina Marra works as Executive Vice President of Roma Fence Ltd. and is proud to have been born and raised in the fence industry. She is the proud mother to one very amazing goalie son who manages constraints on the ice at the same pace as she does in the office. Christina’s connection and dedication to TFC has been from childhood. Having a brother who was born with Thalassemia, she has been fundraising alongside her family since age 13. She has been TFC’s Treasurer and Events Coordinator for over 15 years. Christina loves to read and write, she has a passion for words. Her other hobbies include staying fit: previously in figure skating for over 12 years first as a young competitive athlete and then as a coach; and currently she trains in kickboxing. Christina was born and still lives in Woodbridge, Ontario.
Darya Vorobyova
Secretary
Darya graduated from McMaster University with a BSc in Kinesiology and continued her education at Mohawk College where she studied Diagnostic Cardiac Sonography. She joined the Foundation as a volunteer in 2021, later becoming a trustee, and now serves as the board’s secretary. Passionate about accessible and equitable healthcare, she works on projects which further research and funding for treatments, and educational materials for Thalassemia patients.
Trustees
Zain Ali
Board Trustee
Zain Ali is a board member of the Thalassemia Foundation of Canada and lives with thalassemia major, bringing a deeply personal perspective to the role. He is actively pursuing a Bachelor of Business Administration at the Schulich School of Business, where he is developing expertise in finance, operations, and organizational leadership. Passionate about advocacy, he combines his lived experience and professional skills to the foundation’s growth and impact. Zain is committed to raising awareness and ensuring that individuals living with thalassemia have the resources and support they need to thrive.
Tony Falcitelli
Board Trustee
Tony Falcitelli has been a member of the Thalassemia Community for over 40 years. Tony joined as a Board Trustee 17 years ago and his late brother, Corrado, served as Past President of TFC. Tony brings over 30 years of experience in manufacturing management to his role as a volunteer board member with a strong background in operations, process improvement, and team leadership. Passionate about giving back to the community, Tony is committed to helping The Thalassemia Foundation of Canada expand its impact and serve those in need more effectively.
Amy Mapara
Board Trustee
Amy is a transfusion-dependent thalassemia major patient and a long-time advocate for building stronger, more connected patient communities. She joined the Thalassemia Foundation of Canada Board of Directors in 2022 and brings over 30 years of leadership experience with the Canadian Red Cross, where she has held senior roles in governance, strategic planning, and youth engagement. Through her Board work with TFC, Amy focuses on patient and family outreach, fundraising, and community events that bring people together, raise awareness, and expand support for comprehensive care and treatment. She is deeply committed to acting as an ambassador for the Foundation and strengthening its impact across Canada. Beyond her professional and board work, Amy is passionate about creating inclusive spaces where youth, families, and patients feel supported and empowered.
Ali Oonwala
Board Trustee
Ali Oonwala is a dedicated community leader and business owner with a long history of service in Calgary. He has served on the Board of the Thalassemia Foundation of Canada and previously as a board member of the Rocky Ridge Royal Oak Community Association, where he worked to strengthen local programs and community engagement. Beyond board work, he has volunteered extensively in youth sports as a basketball coach for over a decade, as well as supporting local soccer and hockey teams, reflecting his deep commitment to family and community life. In addition to his community involvement, Ali is the owner of Qamaria Café in Calgary, a thriving small business that has quickly become a welcoming hub for residents. As a family man and entrepreneur, he brings together his professional experience and personal values to build opportunities, foster connections, and support the communities he serves.
Veeresh Pavate
Board Trustee
Veeresh is a person with thalassemia and on the board of Thalassemia Foundation of Canada for the last few years who brings Quebec’s viewpoints with his global knowledge in the field of thalassemia. He is also a Qualitative Health Researcher and presently pursuing a doctoral degree at McGill University in the field of Thalassemia. Veeresh before he permanently moved to Canada in 1990, was a TIF Board Member in the past who represented the Thalassemia patients from India. He still collaborates with TIF in the scientific areas. Veeresh has always been an advocate for the quality care and management for persons with thalassemia locally in the Quebec region as well as globally. He has a very multidisciplinary academic and professional background and loves mentoring be it in healthcare or in the education sector. He presently teaches as a contract faculty at Bishop’s University, his alma-mater in the Eastern Townships.
Research Life and Future Professional Plans: “I hope my research findings will bring out the challenges one faces with thalassaemia to the forefront for the clinicians and the society to tailor resources in the clinical set-up for better management and society to extend empathy towards this community. I intend to continue working in academia and research especially in the areas of Health Education and Health Communication.”
Shirin Taki
Board Trustee
Hi, I’m Shirin, and I’m honored to serve as a Board Trustee for Thalassemia Canada! A little about me: I come from a healthcare background, having worked as a nurse before transitioning into pharmaceutical patient support and, more recently, data sales. I also hold an MBA, which has given me a strong foundation in both business and healthcare strategy. My passion for advocacy and community impact has driven me to take on leadership roles in the rare disease space, helping to elevate awareness and improve support for those affected by thalassemia. This year, my focus is on fostering meaningful initiatives that drive awareness, education, and better resources for the thalassemia community. As someone who understands firsthand the importance of strong patient support networks, I’m committed to making a difference through collaboration and strategic initiatives. Beyond my work, I’m a huge sports enthusiast—you’ll often find me playing volleyball, boxing, or watching football. I also love exploring new restaurants and hidden gems across the GTA. I live in the suburbs with my husband, two cats, and a dog, and I’m always looking for ways to bring more joy, connection, and purpose into my life and the lives of those around me. I’m incredibly proud to be part of Thalassemia Canada and excited to contribute to the growth and success of this organization. Together, we can create a stronger, more informed, and empowered community!
Helen Ziavras
Co-Founder and Past President
Helen is a Co-Founder and Past President of the Thalassemia Foundation of Canada. Helen has been involved with the foundation since 1982 when she started a small support group at SickKids Hospital and eventually grew into a foundation officially in 1987. She is an honours graduate of a four-year diploma program in Public Relations and Communications from Humber College. She is a passionate and resilient individual living with thalassemia major who has a relentless commitment to making a difference. Her personal experience has fueled a deep commitment to patient advocacy where she works tirelessly to raise awareness and push for better, safer, and more comprehensive care for those with thalassemia. She has been actively involved in fundraising initiatives that support vital medical research and promote access to safe blood and multidisciplinary treatment for all patients. Fierce in her patient advocacy and driven to be a voice for the community and a catalyst for change in healthcare she continues to stay on as a Board Trustee of the Thalassemia Foundation of Canada. She also was the first thalassemia major female in Canada gave birth in 1995. Her story is one of celebration of compassion, leadership, and supporting her fellow thalassemia patients.
Carlos Zuzarte
Board Trustee
Carlos Zuzarte, based in London, Ontario, is a retired Industrial Electrician who served General Motors for over 36 years. He immigrated to Canada in 1971, where he was soon diagnosed with Thalassemia, a condition he has lived with ever since. Over the years, Carlos has been actively involved with the Thalassemia Walk and fundraising efforts for the Thalassemia Foundation of Canada, proudly supporting its mission from his home base in London. His goal now is to establish a strong network of Thalassemia patients in London and across Southwestern Ontario, creating a supportive community where individuals can connect, share experiences, access best practices in treatment, and help one another navigate the challenges of this blood disorder. In addition to patient support, Carlos is passionate about continuing fundraising initiatives to strengthen the Thalassemia Foundation of Canada’s advocacy work. For too long, patients in his region have felt disconnected and often had to travel to Toronto to engage with the community. He wants to change that by creating a local hub where patients feel seen, heard, and supported.
Honorary Board Members
Tony Marra
Honorary Board Member
Biography coming soon
Angela Polsinnelli
Honorary Board Member
Biography coming soon
Amadeo Salituro
Honorary Board Member
Biography coming soon
Medical Advisory Board
Dr. Jacob Pendergrast
Chair, Medical Advisory Board
Biography coming soon
Dr. Nagina Parmer
Coordinator, Medical Advisory Board
Biography coming soon
Volunteer Team
Ali Asghar Akhtar
Volunteer
Ali is a lifelong Thalassemia patient dedicated to raising awareness and fostering community among those affected by the condition. His volunteer work with the Thalassemia Foundation of Canada focuses on inspiring positivity, empowering patients through healthcare, and creating support networks. He engages in outreach, fundraising, and community events to promote comprehensive care. Ali aims to connect individuals and families living with Thalassemia and share knowledge about managing the condition. In addition to his advocacy, Ali, an Ottawan and avid foodie, enjoys traveling and exploring new experiences, leveraging his marketing expertise to enhance the TFC’s mission.
Annie Chen
Graphic Designer
Annie has a background in the print and graphic arts industry taking on roles such as a graphic designer and project manager. In her free time she enjoys crafting, doing DIY projects and reading. At TFC, she helps support creative graphics and promotional material for print and social media. The experience has helped her to meet new people, expand her skill set and learn more about the Thalassemia community.
Sharni Dhillon
Volunteer
Sharni is a lawyer based in Alberta, currently practicing at Calgary Legal Guidance. She contributes to her community as a board member for Canadian Blood Services and serves as a Global Moderator for Thalassemia Patients and Friends. Sharni has also engaged in various committees and activities with the Thalassemia Foundation of Canada.
Arezoo Sheykhhasani
Volunteer
Arezoo Sheykhhasani holds a Master’s degree in Biochemistry and currently works as a Scientist in Research & Development at Thermo Fisher Scientific. Alongside her professional career, she is actively involved in supporting the thalassemia community through volunteer and advocacy initiatives. Her work focuses on helping patients better understand their condition, access reliable information, and feel empowered to manage their health with confidence. She also contributes to organizing educational conferences for thalassemia patients and families and is a member of the Thalassemia Foundation of Canada Advocacy Working Group (TFC Advocacy WG).
Angelina Nguyen
Volunteer
Angelina is a Transfusion Dependent Patient who works in Commercial Real Estate. She has a passion for bringing people together, event coordination and philanthropy. She’s excited for the opportunity to get involved with the patient community. Having met some patients in passing at the transfusion suite. She’s most excited to listen and amplify patient stories globally. Finally, Angelina looks forward to supporting the Advocacy, Awareness and Educational programs the TFC is looking to execute.
Regional Organizations
Guelph Chapter
Anita Aimola, President
Vancouver Thalassemia Society of BC
Fari Ordubadi, President
TFC Board Meetings
The Thalassemia Foundation of Canada’s Board of Directors meet the 3rd Monday of every month except on statutory holidays, from September to June. Anyone is welcome to join and participate in the meetings. Members of the community and volunteers are welcome to join meetings. Currently our Board Meetings are held virtually.
Please email: [email protected] for details and instructions to attend the Virtual Board Meetings.
History of Thalassemia Foundation of Canada
The Thalassemia Foundation of Canada began in 1982 by patient advocate, Helen Ziavras, herself living with thalassemia. At the time, there was no structured support for the largest thalassemia patient population in Toronto. The group was created to provide a safe space for patients to share their experiences of living with a lifelong chronic condition with no cure and facing the reality of premature mortality. It also became a forum to raise awareness of the social, justice, and health issues faced by patients who, diagnosed shortly after birth, relied on monthly blood transfusions to survive.
In 1987, Helen Ziavras partnered with Angela Polsineli, a parent of a thalassemia patient, to bring together other parents seeking support and information. They soon realized the need to incorporate the group to expand resources and outreach. Angela traveled to New York to meet with Cooley’s Anemia Foundation, learning from their model to help establish an organization in Ontario. Together, they co-founded the Ontario Thalassemia Association, which was officially incorporated on December 13th, 1988. On May 10th, 1999, the name was changed to the Thalassemia Foundation of Canada to reflect its nationwide membership and efforts to support thalassemia patients across the country. Today, the Foundation collaborates with associations in Quebec and British Columbia, while also connecting with patients in Alberta, Manitoba, and Nova Scotia.
Over the years, the Thalassemia Foundation of Canada has grown into a national non-for-profit organization led by dedicated, hardworking volunteers. Through annual fundraising efforts, the board has successfully established grants to fund scientific research in the field of hemoglobinopathies and thalassemia. Each February, the foundation hosts its well-known Valentine’s Dinner and Dance fundraiser to support education, research, and patient care.
The Foundation has also established a medical advisory committee, led by Dr. Jacob Pendergrast of the University of Toronto. It is a member of the Thalassaemia International Federation (TIF) and actively participates in Canadian committees, with members regularly presenting at national and international conferences.