From a handful of members in the 1990s to a coast-to-coast network today, the Canadian Addison Society has grown into a durable, member-led charity that informs, connects, and advocates for people living with adrenal insufficiency. Its newsletters—and now its virtual meetings and web update—trace the same story: practical help, peer connection, and persistent visibility for an underserved community.

On September 24 1994, eight persons living with Addison's got together to share their story and answer each other's questions. They founded the Canadian Addison Society to support present and future members. At inception, membership stood at just 13 people—an indicator of both the rarity of the condition and the need for a national focal point. The Society was registered as a charity in 1997 and quickly positioned itself as an organization dedicated to education and peer support, laying the groundwork for a member newsletter and regional groups.

Over its first decade and beyond, CAS emphasized member connection: a recurring newsletter, fact sheets, and in-person support group meetings across regions (e.g., British Columbia, Prairies & Territories, Ontario, Atlantic). By the 2000s, the Society’s membership had grown into the hundreds, reflecting increased diagnosis, greater visibility, and steady word-of-mouth through support networks and clinicians.

Through the 2010s, CAS broadened its role from community convenor to information hub, publishing educational materials, highlighting guest speakers at meetings, and sharing practical guidance for day-to-day management (e.g., stress dosing and emergency preparedness). The Society’s site and newsletter became key channels for updates on medication availability and for pointing members to reputable medical resources—positions it continued to strengthen as its audience widened.

The pandemic period accelerated a digital transition: virtual support groups opened attendance beyond geography, with recurring online meetings for multiple regions and affinity groups. This move significantly increased accessibility and cross-country cohesion, helping members share lived experience and coping strategies regardless of location.

CAS also became a touchpoint for urgent updates—like alerts on hydrocortisone and related steroid shortages and conservation strategies—reflecting its practical role in helping members navigate disruptions in essential medications.

By 2025, CAS was actively promoting broader public awareness, including the International Adrenal Disease Awareness Day (April 7) coordinated by the International Adrenal Consortium. These efforts aim to improve understanding among clinicians, researchers, and the general public, while uniting rare adrenal conditions under a shared banner.

From a starting base of 13, CAS reported growth to over 600 members by late 2025 and continues to invite lifetime memberships that connect newly diagnosed and long-time patients, caregivers, and families. The Society maintains its cadence of quarterly newsletters, plus virtual meetings that now span Canada. Together, these channels constitute a living archive of the Society’s evolving priorities—education, peer connection, and advocacy for reliable access to medicines and informed care.
In parallel with national growth, CAS is referenced within rare-disease networks and directories as a patient-driven organization that publishes newsletters and fosters local and national support. This positioning underscores CAS’s twin identity: a grassroots community and a recognized stakeholder in the rare-disease landscape.
From its humble beginnings in the 1990s to a thriving national network today, the Canadian Addison Society continues to grow, adapt, and advocate for everyone affected by Addison’s disease and adrenal insufficiency. What began as a small group of determined patients has evolved into a vibrant, informed community connected across Canada and beyond. As science advances and awareness expands, the Society remains dedicated to empowering people with knowledge, fostering connection, and ensuring that every person living with adrenal disorders can look forward to a healthier, more confident future.

The Canadian Addison Society is guided by a dedicated Board of Directors made up of individuals with diverse expertise and a shared commitment to supporting those affected by Addison’s disease and adrenal insufficiency. Many of our board members are patients, caregivers, or healthcare professionals who bring personal insight and professional experience to their roles. Together, they provide strategic leadership, ensure accountability, and help advance our mission across Canada.

Deborah Thomson

President

Debby is a retired educator with a strong background in volunteer leadership and community service. After moving to Nanaimo, B.C., she became deeply involved in local organizations, serving as President of both the Nanaimo Marine Rescue Society—where she developed a boating safety program for children—and the Nanaimo Newcomers Club. Diagnosed with Addison’s disease in 2012, alongside Type 1 Diabetes and Graves' Disease (Schmidt’s Syndrome), Debby brings lived experience and empathy to her advocacy work. Her diagnosis sparked a commitment to support others navigating adrenal insufficiency. In 2023, she answered the call to serve and was appointed President of the Canadian Addison Society. Since then, she has led the organization through a period of growth and renewal, working with a dedicated team to expand education, resources, and community engagement. Debby is passionate about building a strong, inclusive future for the Society and empowering others through knowledge and connection.

Melanie Westover

Vice-President and Co-Lead Ontario South/Central

Melanie was diagnosed in 2015 with Addison's Disease after declining health resulted in an adrenal crisis. A few months later she attended her first in-person support group meeting in southern Ontario and met others with the same rare disease. She also learned how to administer the emergency Solu-Cortef injection. She continued to attend the semiannual meetings, eventually helping out with the injection training. With stable health, she took the opportunity to join the Society by co-leading the South Central Ontario region and joining the board of directors. She enjoys giving back to her community by co-hosting virtual monthly support group meetings in her region. Many members have expressed their appreciation for this support, noting that many doctors aren't nearly as helpful. Melanie works full time doing pension administration education and training.

Kim Fuller

Secretary

Kim plays a vital role in ensuring the organization operates smoothly by handling administrative tasks, maintaining records, and supporting governance. Kim runs a company called Phil and her experience working with local, national and international charities combines over 25 years in marketing and fundraising, with a lifelong passion for volunteering in the community. Misdiagnosed with Addison’s in 2024, she battled adrenal insufficiency for two and a half years before regaining function of her adrenals. She’s grateful for the CAS community helping her navigate through her health challenges.

Mike Taylor

Treasurer, web & IT committee member

Mike provides objective oversight for our financial operations. He is a seasoned IT specialist and fundraising operations expert with over 25 years of experience in web development, technical support, and IT consulting. He currently works at SimpliPhi, where he focuses on optimizing fundraising strategies and implementing technological efficiencies for organizations.

Julie Baumann

Board Member, Advocacy committee co-chair

Based in London, Ontario, Julie was diagnosed with Addison’s disease in 2000 and has lived with adrenal insufficiency for more than two decades. Her lived experience provides deep insight into the challenges faced by patients and families and drives her commitment to advocacy, education, and community support. With extensive experience in nonprofit leadership, Julie co-founded SafeSpace London and the Unity Project Relief Shelter and has served as a peer researcher in community-based projects. Recognized with London Inc.’s Top 20 Under 40 award in 2021, she brings expertise in governance, strategy, and program development to the Canadian Addison Society.

Britt Burnham

Board Member, chair of the communications committee

Britt Burnham is a strategic communications leader with nearly two decades of experience in public engagement, governance, and organizational leadership. Britt's experience on boards and in her professional life allows her to navigate complex issues, foster community building, and align initiatives with strategic goals. After navigating 20 years as a patient while balancing family, career, volunteer work, and wellness, she’s eager to both deepen her own understanding of effective management and help connect Society members with resources to lead fuller, more supported lives.

Harriet Davies

Board Member

Harriet is a pharmacist, educator, and healthcare leader from Nova Scotia with extensive experience in professional leadership, governance, and healthcare education. She works as the Assistant Director Practice Experience at the Dalhousie University College of Pharmacy and as a Pharmacist at the Dalhousie School of Social Work Clinic. She is passionate about improving patient care through collaboration, advocacy, and lifelong learning.

Harriet brings personal lived experience to her role with The Canadian Addison Society. As the spouse of an individual living with secondary adrenal insufficiency, she understands the challenges faced by patients and families and is committed to advancing awareness, education, and support for the adrenal insufficiency community. She is honoured to serve on the Board of Directors and contribute to the Society's mission of improving the lives of Canadians living with Addison's disease and adrenal insufficiency

Robert Gee

Board Member, Fundraising committee member

Robert Gee is a Senior Manager with CIBC Mid-Market Agriculture & Commercial Banking, where he brings leadership and insight to Canada’s agribusiness sector. Diagnosed with Adrenal Insufficiency in 2019, Robert turned his experience into a mission for awareness and support. Since joining the Addison’s Society that same year, he has been an active voice in education and advocacy, helping to empower patients and caregivers navigating this rare condition. Driven by empathy and purpose, Robert is passionate about building understanding, strengthening community connections, and promoting better outcomes for those affected by Adrenal Insufficiency.

Julie Girondat

Board Member

Julie is an advocacy and patient support professional based in Oakville, Ontario, with more than 20 years of experience in the Canadian healthcare and pharmaceutical industry. Her work has focused on patient advocacy, rare disease, stakeholder engagement, and helping patients navigate complex healthcare systems with greater access and support.

Julie was diagnosed with Addison’s disease and Hashimoto’s thyroiditis in 2025 following an adrenal crisis, an experience that deepened her passion for patient education, awareness, and community connection. She brings both professional expertise and lived experience to her volunteer role with the Canadian Addison Society Advocacy Committee.

Having grown up on a cash crop farm and now running her own hobby farm, Julie values resilience, hard work, and community, principles that continue to guide both her personal life and advocacy efforts.

Mhairi Hilliker

Board Member

Mhairi is a dedicated law enforcement professional based just outside of Kingston, Ontario, with 20 years of experience in policing and law enforcement. Prior to her career as a police officer, she spent a decade working in the mental health sector as a community crisis worker, a role that built her deep commitment to supporting individuals through critical life challenges.

Mhairi’s personal connection to the adrenal insufficiency community began in 2019 when she was diagnosed with Primary Adrenal Insufficiency. She joined the CAS that same year to deepen her understanding of the condition and find peer support. Fortunately, her health has remained stable since her diagnosis.

Driven by a desire to give back, Mhairi serves as the co-lead of the Ontario East support group. As a board member, she is eager to bring her unique blend of community crisis management, public service experience, and lived perspective to further advance the mission of the CAS and support members across the country.

Candice Johannesson

Board Member, Parent Support Group representative

Based in Winnipeg, MB, Candice is the parent of a young child with classic salt-wasting Congenital Adrenal Hyperplasia, diagnosed through newborn screening. Since entering the adrenal insufficiency community, Candice has worked to improve local patient safety protocols, including updating illness management standards and helping ensure EMS in Winnipeg is trained and equipped with Solu-Cortef. She also successfully advocated for access to age-appropriate hydrocortisone through Health Canada's Special Access Program. Candice serves as the Canadian representative for the CARES Foundation and lead CAH Advocates Canada, a grassroots support group for patients and caregivers. By profession, Candice is a teacher and passionate about improving care and access for individuals with adrenal insufficiency.

Lori O'Brien-Adams

Board Member

Lori is a project management professional with 20+ years experience leading complex programs and initiatives in the technology sector. Throughout her career, she has been recognized for building strong relationships, driving strategic outcomes, and advocating for people through times of change and uncertainty.

Lori's connection to the adrenal insufficiency community began in December 2025 when her husband experienced a life-threatening Addisonian crisis that resulted in cardiac arrest. After weeks of unanswered questions and ongoing medical challenges, a family member who is a cardiologist suggested testing his cortisol levels, and a diagnosis of Addison's disease was confirmed.

That experience revealed the critical importance of awareness, education, and patient advocacy. It also highlighted the challenges many individuals and families face in obtaining timely diagnosis and treatment for rare conditions. Through her family's journey, Lori developed a deep appreciation for the role that patient organizations like the CAS play in providing support, resources, and community during some of life's most difficult moments.

As a board member, Lori is passionate about advancing awareness of adrenal insufficiency, supporting newly diagnosed patients and caregivers, and advocating for improved recognition and care across Canada. Lori resides in Paradise, Newfoundland with her husband, Mark, and their twin daughters.

Sara Rodrigues

Board Member, Health & Research committee member

Sara is a parent advocate based out of BC, supporting a child born with Salt Wasting Congenital Adrenal Hyperplasia, alongside other disabilities. Sara has successfully led and advocated for policy changes provincially for children with adrenal insufficiency, to have access and support during adrenal crisis. In her professional life, she previously worked as a RN and currently works for a Non-profit Pediatric Palliative Care Center as an Engagement advisor. This role supports bridging the gap between clinical expertise and patient and family experiences within the healthcare system. Living with disabilities herself, she is focused on creating spaces to share knowledge amongst those with lived experience so patients and their loved ones can advocate for the best care possible.

Stacey Thornton

Board Member, Advocacy committee co-chair, Co-Lead Ontario South/Central

Stacey was diagnosed in 2013 with a pituitary adenoma causing Cushing’s Disease. A Bilateral Adrenalectomy, where both of the adrenal glands were removed, resulted in full adrenal insufficiency in 2014. Since then, Stacey has been able to manage her health fairly well and has remained stable. She is passionate about advocacy for those living with rare and chronic conditions. She was the CAS newsletter editor for 2 years and volunteered with her local hospital in Sarnia, ON as a Patient Experience Partner to help the staff and management see things from a patient’s perspective by sharing her story and struggles with diagnosis. She works full-time as a Controller at a golf course and is also a small business owner.

Annmarie West

Board Member, Co-Lead Atlantic Provinces, Health & Research committee member and Distribution Coordinator

Annmarie was diagnosed with primary adrenal insufficiency in 2021, following a severe adrenal crisis that led to her hospitalization. Fortunately, the attending ER physician—originally from the UK—recognized the symptoms immediately, administered lifesaving treatment, and later used her case for research. Impressed by her resilience and experience, he offered her a job opportunity afterward. Although her condition is now relatively stable, Annmarie continues to face significant challenges due to the side effects of her medication. A retired paramedic with nearly 16 years of dedicated service, she has since channeled her energy into new endeavors. She owns and operates a quilting and crafting business and delivers Red Cross programs across the province of New Brunswick. Annmarie is deeply committed to raising awareness about adrenal insufficiency and continues to advocate for improved understanding and support for those living with this condition.