Acromegaly CanadaAcromegaly Canada
The Acromegaly Canada Board of Directors is passionate about fulfilling the organization’s mission: to raise awareness through education while providing a network of support for patients and their families across Canada.
After being diagnosed with acromegaly in 2008 and realizing there was no support system in Western Canada, I started the Vancouver Acromegaly Support Group. My focus was to bring people with acromegaly together, so we could feel less alone, support each other, and realize we deal with similar issues. To help us understand our disease better, the group offers presentations from a variety of medical professionals, giving us the opportunity to take better care of ourselves and improve our quality of life.
This led to the founding of Acromegaly Canada in 2018. Our national organization is dedicated to making acromegaly more widely known, promoting better care, and sharing knowledge between the medical community and patients. I continue to strive to bring awareness and knowledge to the general public in Canada and beyond, speaking with the media and working closely with my Member of Parliament to have Acromegaly Awareness Day approved by Parliament.
After being diagnosed with acromegaly in 2012, I sought information and support to help manage this life-changing condition. Online patient groups have been a vital resource for me, and I was delighted—and relieved—to finally meet a fellow acromegaly patient in person in 2018. Since then, I’ve been fortunate to meet others with acromegaly through the “Light of Day” art exhibit and conferences across the globe. I believe that by sharing our journeys with this rare disease, we can educate each other and show the many faces of acromegaly. The more we all know about the range of symptoms, the earlier the diagnosis, the more varied our treatment options, and the better our quality of life.
I’m honoured to be part of Acromegaly Canada. Pulling from a career in non-profit communications and marketing, I aim to help our team raise awareness, increase understanding, and build a strong network of support across the country.
I was diagnosed with acromegaly in 2017 after 8+ years of symptoms. I went looking for support and was led to Acromegaly Canada by my endocrinologist. The relationships I have built through this community have been invaluable in helping me cope with this disease and become educated in how to support myself and others.
Joining together my experience as a registered nurse and firsthand experience living with acromegaly, I strive to be an advocate and voice to the acromegaly community.
I have been living with acromegaly and its effects for about 50 years. I started to have issues related to the pituitary tumour in middle school (headaches, excessive sweating, and joint pain). I had seen many doctors over the years regarding the headaches; they thought it was sinus infections. Then I got lucky: I needed to change my family doctor. My new doctor took one look at my x-rays and said, “You have massive bones.” He asked me some questions related to my shoe size change, wanted me to bring in old photos of myself, ran blood tests, and scheduled an MRI. I had a massive pituitary tumour that had grown into my sinuses. I was diagnosed and had surgery to remove my tumour in 1994, and had follow up radiation treatment in the spring of 1995.
I am a structural engineer who has worked on many power, water, and wastewater projects around the world: the United States, Egypt, Iraq, Libya, and Canada. I was in Libya when the civil war broke out, and my company transferred me to Vancouver, BC, in 2011.
I have had a good life with my wife, Kathy, and our four children, and now it includes three grandchildren. I am lucky to have support from my family during my journey with acromegaly.
I am a Legal Assistant of 25 years and graduate of a Health Care and Medical Transcription College. I have been a member of “Team Acromegaly Support” since 2017, when my best friend Traci Turner was diagnosed. I became involved in the Vancouver Acromegaly Support Group as soon as I could, and have attended many Acromegaly Canada Conferences. I am working on learning more about this disease and how to be the best support I can be. I am looking forward to being Secretary for the Acromegaly Canada team.
When I'm not typing or writing up notes, I enjoy reading and doing walkabouts in my new community of Kamloops.
My husband, Bill, was diagnosed with acromegaly over 30 years ago. Even though we have had some challenges, we have had a good life together.
Born and raised in the Chicago suburbs, I earned a degree in English education and taught at the community college level. I have been a writing tutor and an exercise class instructor. When our four children were in grade school, I volunteered as an elementary school health room aide, library aide, and kindergarten parent helper. I helped facilitate gifted and talented reading programs. My interest in fostering creative problem solving led me to become a Destination Imagination team coach and Camp Invention Director.
I was the “parent in charge” during my husband’s multiple overseas assignments, the last of which was a job transfer to Vancouver, BC, in 2011. We became involved in the Vancouver Acromegaly Support Group in 2013. Canada has become our new home, and we became permanent residents last year. I am looking forward to helping Acromegaly Canada build a strong start.
I was diagnosed with acromegaly in 2023 — a life-changing moment that has deepened my passion for advocacy, support, and education. As someone who loves the outdoors and finds joy and peace in gardening, I believe in nurturing both nature and the human spirit.
Professionally, I am an Education Assistant, a role that allows me to support and empower others every day. That same calling to support others extends beyond the classroom and into my work as a patient advocate. Through my involvement with Acromegaly Canada, I aim to raise awareness, offer encouragement, and be a voice for those navigating this rare disease.
I am married and a proud parent of two children. My family is my anchor, and their support fuels my commitment to advocate for those affected by acromegaly. Whether through sharing my story, listening to others, or championing better care and understanding, I am dedicated to making a difference in the acromegaly community.
The Acromegaly Canada Board of Directors invites members of the acromegaly and gigantism community to join the Board or any of its committees (Fundraising, Communications, and Family and Caregivers).
We are currently seeking individuals who would like to volunteer for these roles:
• Chair, Family and Caregivers Committee