The CSPA Board of Directors is composed of patients, skin-health professionals, educators, and members of industry. The group meets face-to-face once a year at the Annual General Meeting and has regular conference calls throughout the year. Board members are elected and serve a two-year term.
The board, which has representation from across Canada, sets the mandate for the organization and oversees staff to ensure financial and human resources are allocated appropriately to best serve Canadian skin patients.
The current Board of Directors:
Sandy Burton, Ontario
Sandy was diagnosed with Rare Skin Disease (Darier's) at 3 years old. She has experienced many flareups and experimental medications but feels she is a survivor. She has an amazing Dermatologist and his Mother before him (Dr.Rikki Schachter and Dr,Dan Schachter) who she is so thankful to. She is honoured to be a Director on CSPA Board and is proud to be a voice in helping people with skin conditions.
Christine Butler, Newfoundland and Labrador
Christine is a retired public servant who now serves as a municipal councillor in her hometown of Conception Bay South. She is a board member with the Conception Bay Family Resource Centre. She is a Big Sister and a community volunteer, but her favourite role by far is being Nanny Christine.
Christine was born with a rare skin disease called recessive congenital ichthyosis erythroderma (CIE). When she was officially diagnosed at age 21 she started on the road of learning all things ichthyosis. She says “I don’t know that I can say I was happy to be born with this rare skin disease called recessive CIE, but I do know I can say that having this disease has made me strong, has made me do things that I might not have otherwise, has made me reach and go beyond goals I might not have otherwise. I have grown to be a confident woman who has had many achievements; in family, work and the community”.
Through social media, Christine shares her story around the world, as do many others. This forum provides support to each other. Patient support is key to understanding their needs; whether it’s skincare, medications and creams, challenges and frustrations, or just a safe, comfortable place to share all things ichthyosis. These needs would be the same for any person with any skin condition or disease. She is presently organizing a future patient forum with the help of her social media friends.
Christine is excited to be part of the CSPA and looks forward to bringing the 2017-2022 Strategic Plan to life!
Barbara-Anne Hodge, Manitoba
Barbara-Anne Hodge is an Occupational Therapist who worked on the Burn Unit at the Health Sciences Centre in Winnipeg, MB for 27 years. Inspired to support and nurture the burn survivor community, she helped found the Mamingwey Burn Survivor Society and has served as Chair since 2003. She is also a founding member of the Canadian Burn Survivors Community and is currently on the board of the Winnipeg Firefighters Burn Fund Inc. She has been involved with the Canadian Skin Patient Alliance since 2008 and is currently the President of the Board.
Felix Kongyuy, British Columbia
Felix is a non-profit and electoral policy consultant. He brings decades of experience in social services and business sector combined to CSPA. In the past years, Felix has co-founded three community organizations and he understands the need for partnership, inclusive leadership, and empowerment in board governance. He lives in British Columbia and has developed numerous services for Newcomers, Immigrants, Canadians, and Small businesses. As a community organizer, Felix has a Diploma in human services, Bachelor Degree in Business Administration and Master in Electoral Policy and Administration. He is seeking new challenges and has a strong compassion for helping, fundraising, advocating, mediating and solving conflicts.
Kyla LaHaye, Alberta
Besides being involved with the CSPA as a Board Member, Kyla is a full time stay at home mother to two little boys, as well as a skin patient.
Recently, Through specialized testing, Kyla was finally officially diagnosed with a rare disorder called Autoimmune Progesterone Dermatitis. As well as having APD, she also tested positive for being photo sensitive/allergic to UVB light. An official diagnosis however for the photo sensitivity has not yet been given. She is closely working with her doctors and is just in the beginning process of being seen by medical genetics department in Calgary Alberta.
In her spare time, Kyla enjoys working out, traveling, singing and spending quality time with her family.
Munish Mohan, Ontario (Chair)
Shiamala Paramasivam, Ontario
Shiamala Paramasivam, PMP® is currently pursuing her MBA and has a background in project management, finance and health sciences. In her leisure time, Shiamala enjoys traveling and photography.
Hansi Peiris, Quebec
Hansi Peiris is a Clinical Research Coordinator from Montreal, Quebec with a B.Sc. in Psychology from McGill University. She is passionate about dermatological research and advocating for skin patients. Hansi wishes to pursue her higher education to further advance clinical trial research while continuing to promote and protect the health of skin patients from across the globe.
Julie Powers, Ontario
Julie Powers has her Post Graduate Diploma in Event Management, and currently is the Director of Member Relations and Events for a Private Fishing Club in Mt. Albert, Ontario. She is a co-founder of The Canadian Alopecia Areata Foundation, CANAAF, which has grown from a small group picnic in a park, to an organization with successful independence. When not volunteering on the CANAAF Board, or participating and facilitating the annual conference, she enjoys being with her 2 teenagers and her stubborn but loveable French bulldog.
Ashutosh Sharma, Quebec
Dr. Sharma is pursuing his post medical education with specialization in Family Medicine at McGill University. He possesses special interests in skin conditions with special emphasis on access to care for patients suffering from skin conditions.
Previously, he has served as an executive director of various community organizations including India-Canada Organization and NACOI.
He is committed to patient education and advocacy. We welcome Ashutosh to CSPA and appreciate his medical knowledge and dedication to the well-being of our patient population.7
Audrey Sto. Domingo, Ontario
Marianne Welsh, Nova Scotia
Marianne Welsh is an industrial relations professional, former teacher and researcher, and has also worked in community mental health. She holds degrees from Mount Allison University and Memorial University of Newfoundland. She has lived with Chronic Spontaneous Urticaria since the age of twelve although she didn’t receive a diagnosis until 1999. In her case, the condition is severe and refractory. Marianne lives in beautiful Dartmouth, Nova Scotia with her husband and their two cats. Areas of interest include advocacy and patient education.
Executive Committee: Julie Powers, Munish Mohan, Hansi Peiris