Barbara Insley – Chair and Executive Director
Barbara and her two daughters created their family through international adoption. Both girls were born in Ethiopia. Her eldest was recently diagnosed with AGU and Barbara is dedicated to changing this disease’s outcome for her daughter. Barbara has extensive volunteer experience. She is a past Board member of Public Dreams Society, past Board member of the Eden Project as well as a past Member and Chair of the CFA Institute Disciplinary Review Committee. She is a Board Member of the BC Chapter of the Private Capital Markets Association of Canada and of the Rare Trait Hope Fund, a U.S. 501(c)(3) non-profit organization with the same mission as Rare Trait Hope Society.
Barbara has spent her career in the financial services industry. She studied finance and economics at Simon Fraser University before completing her law degree at the University of British Columbia in 1993. She was called to the BC Bar in 1994. In 2003 she became a CFA charterholder and in 2019, she obtained her Certified Information Privacy Professional (Canada) certification. She is currently Chief Compliance Officer and Chief Operating Officer at a private investment dealer.
Judy Rudin – Director
Judy Rudin is a communications management professional with 25 years experience providing media and public relations expertise to corporate, governmental and social business clientele.
Judy has overseen, directed or authored winning communications projects in Canada and the United States. She is a past Vice President of the Western Magazine Awards, and a former member of the International Association of Business Communicators.
A native of Vancouver, BC, Judy has volunteered her time on a number of boards, including the Canadian Institute for the Blind, BC/Yukon Division. She sat on the organization’s finance and governance subcommittees and chaired several high profile fundraising events. Judy is a life-long learner currently exploring the impact on cognition and behaviour of rare diseases which are genetically based.
Mary-Ann McKinnon – Director and Vice-President, Community Engagement
Leslie Rose – Director and Secretary
Leslie Rose is Senior Legal Counsel in the Corporate Finance Division of BC’s securities regulator. She is driven to ensure a fair playing field for everyone in BC’s capital markets. In the past 20 years she has developed securities regulations in a number of areas critical to ensuring investor confidence. She was instrumental in introducing rules allowing equity crowdfunding by start-up and early stage companies that followed the example set by charitable crowdfunding. Leslie was called to the BC Bar in 1995. Prior to shifting her career towards regulation, Leslie practiced corporate finance, securities and corporate/commercial law primarily for public companies.
Rare Trait Hope Society is Leslie’s first foray into the non-profit world. Her closest friends have children suffering from rare disorders and for that reason she feels it’s an excellent fit.
Jody-Ann Edman – Director and Treasurer
Jody-Ann is the mother of 2 boys, the eldest of whom joined the family through adoption. Her parenting journey has provided her with the opportunity to learn and grow with her children as they navigated mental health and learning challenges. Jody-Ann’s volunteer experience has been focused on child development, mental health and education as well as co-operative community living. She is a past Board member and Treasurer of Creekview Tiny Tots Society, St.James Daycare Centre and Madrona Parent Association. She also was an Advisory Committee member of the Social and Emotional Development Enhancement Project, an innovative, federally funded project lead by the BC Centre of Ability. She is currently a Director and Treasurer of the Juniper Community Co-Operative Housing Association.
Jody-Ann is a CPA,CA and began her career at KPMG LLP in Toronto, ON. She holds a B.Com (Hons.) from Laurentian University and a Certificate in Executive General Management from UBC Sauder School of Business, Executive Education. Jody-Ann regularly pursues personal and professional development by completing leadership and conflict resolution courses through the Justice Institute of BC. She has spent over 20 years working in the securities industry and is currently Manager, Financial Reporting at the BC Securities Commission.
Wendy Saint-Onge – Head, Social Media
Wendy is the sister to Barbara and aunt to Makeda. She supported Barbara throughout the adoption process and, despite being devastated when her niece was diagnosed with AGU, she is determined to do whatever is necessary to ensure a positive outcome.
Wendy worked in public service for 27 years before retiring in 2017. Since that time she has seen two of her three children graduate and head off to university. She has travelled extensively and channeled her passion for writing into wendylynnesaintonge.wordpress.com, a blog about her life experiences.
Wendy believes that social media can be a powerful tool and often uses various platforms to raise awareness for causes she feels passionate about. She is currently working to raise awareness of AGU and to encourage people to contribute to the upcoming clinical trial.
She also likes to talk a lot, and has discovered that social media allows her to get her ideas out to everyone, whether they want to hear them or not. She likes to express herself through performance art in viral TikTok videos, such as the two you can find in our Media section.