Board of Directors

Prem studied psychology at Western University in London and worked with children and adults as a psychometrist and neurofeedback specialist with psychologists and neuropsychologists for several years. During this time, she designed and implemented employee mental health assistance programs in medium scale organizations, contributed to ethics research with the College of Psychologists of Ontario, and presided over governance boards. 

Prem then enjoyed a rewarding career, delegated in many disciplines of law including administrative, criminal, quasi-judicial and international, providing subject matter expertise in Canada and abroad. As a senior government leader specializing in transformational change, she led large scale complex responses to critical events, organizational mental health,  modernizing organizations to align with their identified values and desired outcomes. An executive coach, she led a designated Centre of Leadership Excellence and mentored hundreds of leaders. Prem has been a key note public speaker in topics including law, leadership, organizational culture, equality and wellness.

As an entrepreneur, Prem has enjoyed small enterprises of health care, advocacy and coaching. Through her work, advocacy and personal interests, Prem is passionate about human rights, inclusivity, law, leadership, health care and service to others. She is affected by the familial type of cavernous malformation CCM1.  

When asked why volunteering for Cavernous Malformation Canada is important to her,  Prem highlights a deep commitment to raising awareness and finding a cure while improving life for those affected by CM and their loved ones. "I have experienced a lot of loss in my life due to this rare disease and the impact to my family has been substantial.  It took a bit of time, but I soon felt thankful for some of the losses, as they gave me an opportunity to help others that have been through something similar, with CM.  It's the people in our community that I have the honour of speaking with every day, that inspire me. Their strength and absolute warrior mind set, has made me resolute in moving things forward in Canada."

Leanne lives just outside of Lethbridge, Alberta. She is married to Trevor, who was diagnosed with Familial CCM2 in 2022. 

Leanne is a retired teacher, who enjoys traveling and spending time outdoors. She has two daughters, who live nearby, and feels fortunate to often be able to spend time with their families and her grandchildren.

When asked why volunteering for Cavernous Malformation Canada is important to her, Leanne responded "After Trevor's diagnosis, we received amazing support from Cavernous Malformation Canada. We also discovered that many of the medical people we encountered had never heard of cavernous malformations. I volunteer so that others will receive help and support, and to increase awareness within the medical community. "

Edith lives in the nation’s capital, Ottawa, Ontario, where she works as an executive consultant, following a long career in the federal public service.

Edith’s interest in cavernous malformation began in the ‘80s when her nephew underwent several craniotomies as an infant. Edith’s husband and daughter were subsequently diagnosed with cavernous malformation in the ‘90s along with other members of her family, which led her to become more involved with the CM community through Facebook and, eventually, the former Angioma Alliance Canada.

When asked why volunteering with Cavernous Malformation Canada is important to her, Edith responded “When members of my family were first diagnosed with cavernous malformation, I could never have anticipated that I would engage with so many people, in Canada and abroad, on a regular basis. It is tremendously gratifying to support others living with this rare disease by sharing information and increasing awareness about cavernous malformation.”

Brittany (she/her) resides in Edmonton, Alberta where she works as an analyst. Members of her immediate family have been diagnosed with CCM1. 

When asked why volunteering for Cavernous Malformation Canada is important to her, Brittany responded "I have seen first hand how difficult it can be for patients and their families to receive and understand a diagnosis. It's my hope that we can help other Canadians, including medical professionals, to find the information and support they need to have a better understanding of this disease and its impacts."

Kailley was diagnosed with a sporadic cavernous malformation in 2022.  This led to a deep dive into wanting to know everything about cavernous malformation. In May 2024, she had her cavernoma resected from her cervical spine. 

Another passion of Kailley's is mental health, which she has worked in for over 15 years. She has a degree in psychiatric nursing.  In 2022, during admission to the hospital related to her cavernous malformation, she finished her final assignment to complete her master’s degree in clinical health sciences.

When asked why volunteering for Cavernous Malformation Canada is important to her, Kailley shared "It's because having a rare disorder can be scary and lonely. Finding this group gave me a sense of control and reassurance that I wasn’t alone; it connected me to amazing people who understood what I was going through and helped create a supportive community. I want to continue to help spread awareness and continue to help make community connections, so nobody feels alone and scared by this disease."

Domenica is a Registered Nurse with over 13 years of experience, beginning on a busy surgical floor then transitioned into critical care. Driven by a dedication to patient advocacy and professional development, she is pursuing a master’s degree in nursing education and leadership, blending her hands-on expertise with a passion for empowering future healthcare professionals.

When asked why volunteering with Cavernous Malformation Canada is important to her, Domenica responded "Volunteering with Cavernous Malformation Canada is close to my heart because I’ve experienced firsthand the challenges and uncertainty that come with a cavernous malformation diagnosis. After my own brainstem hemorrhage, I felt the need to connect with others who truly understand this journey. Serving as a volunteer director allows me to help others navigate the healthcare system, advocate for their needs, and find community support. I’m passionate about empowering individuals to take control of their health journey, and I’m grateful to work with an organization dedicated to making a difference."