THE ILC CHARITABLE FOUNDATION - Key Persons
Job Titles:
- Member of the Board of Directors
Allan joined the ILC Board when his wife was diagnosed with Ehlers Danlos Syndrome (EDS), in order to become involved in supporting and advocating for improved health care for people living with chronic pain due to EDS and related conditions. He has over 30 years of experience in both the public and private sectors, in management, health and social research, and university teaching. For 15 years he held management positions with Health Canada, supervising policy and research analysts who identified and prioritized the department's health information needs and prepared health reports including the biennial Healthy Canadians Reports released by the Health Minister. During this period, he also contributed to the re-organization of several Health Canada divisions by preparing mission statements, goals and objectives, and engaged in all aspects of staffing (recruitment, preparation of job descriptions and written exams, and oral interviews). As a research analyst, he managed a large multi-year contract for the National Health Promotion Survey. As a private-sector consultant, he planned and conducted two national surveys. In both the public and private sectors, he provided technical advice and support on a wide range of social research and evaluation projects, including health and social surveys, opinion polls and a magazine reader survey. He also taught Social Research Methods at Carleton University for two years. He has an M.A. (Sociology) from Carleton University, Ottawa, and is currently working on a Ph.D. in Sociology (Political Economy Specialization) at Carleton University.
Job Titles:
- Medical Leader of the Calgary Pain Program
Job Titles:
- Secretary of the Board of Directors
Jacqueline came to the ILC Foundation with a strong belief in Family Centered Care and a desire to assist individuals living with complex, chronic health needs. Having worked for over twenty years at ErinoakKids, Centre for Treatment and Development primarily coordinating special needs/respite funding and services for families, she brings with her vast knowledge and experience. Jacquie was an integral part of the training and development of ErinoakKids, pilot respite program, in 1996, which has successfully grown into one of Central West Region's largest respite program for children with physical, developmental and medically fragile needs. Her diverse, multidisciplinary experience has allowed her to better understand the challenges families face, bringing expertise in identifying timely services and support with the recognition on the importance of collaboration to ensure streamlined and, optimal health services. Jacquie knows that navigating the health care system can be difficult. For individuals and families coming through The ILC, they don't have to make this journey alone.
Job Titles:
- Executive Director, Board Director / Secretary -
Katherine Wynne-Edwards has recently stepped back from her position as the Jack Manns Professor of Comparative Endocrinology at Canada's newest Veterinary School (University of Calgary), in acknowledgement of the realities of her personal journey with EDS. Before that, she was a Professor of Biology at Queen's University in Kingston.
Over her academic research career she has described herself as a neuroendocrinologist, steroid chemist, physiologist, and field ecologist. Her work has ranged from the study of fetal stress hormone synthesis in human umbilical cord blood, to following small hamsters around the steppes of Siberia.
She and her husband have two daughters, one of whom also suffers from EDS. As her next life-long learning project, she looks forward to contributing to ILC Research Program development and anywhere else where her skills can help advance understanding of chronic pain mechanisms, mitigation and management - particularly in the context of EDS.
Job Titles:
- Member of the Board of Directors
Mary Argent-Katwala is a life sciences and healthcare professional with over fifteen years of experience in the commercial, nonprofit and government sectors. Mary has held leadership positions with the Canadian Partnership Against Cancer and the Canadian Cancer Society. She began her career in the UK, where she worked as a consultant in pharma, biotech and medtech. Mary holds a PhD from the Institute of Cancer Research, University of London, UK, and an MA from Cambridge University, UK.
Mary Steckner is a dedicated volunteer in the community where she lives. Her background as a library technician brings a level of expertise in searching for and identifying helpful resources. Prior to working in libraries, Mary was a case manager for families that had a child with autism, helping them to access resources and school supports.
Job Titles:
- Health Resources Consultant
Job Titles:
- Member of the Board of Directors
- CMO of Wizz Marketing
Peter Reinhardt, CMO of Wizz Marketing, a subsidiary of Saving MainStreet Inc., describes himself as a customer centric marketer. Past executive with Carlson Marketing, Peter brings tremendous insights on being customer focused, targeted in approach and the creation of purpose driven marketing solutions. His clients range from Fortune 500 companies to small independent retailers and artists.Peter has a big heart and receives tremendous satisfaction in giving back to the community as well as many individual groups that have asked for his help. "I feel so thankful to be surrounded by so many great people; giving back using my God given talents is a way to demonstrate my gratitude". He has been very involved with The Meeting House, Kerr Street Ministries, Oakville's Largest Rock'n Roll Party, the development of The ILC Foundation and numerous independent charitable initiatives.Peter lives in Oakville with his wife Pamela. They have three children who are spread out across the country, Matthew in BC, Nik and Kristina in Ontario.
Randy is a strong leader and mentor who brings a passionate approach to the services he provides to individuals and organizations in both the for-profit and non-profit sectors.
Randy is known as an influencer. He helps to bring clarity through identifying ways to influence how people see things through simplified communication. Sometimes, this is through writing, action, or just listening and giving their thoughts "words."
Growing up with several undiagnosed rare conditions, Randy sought out and found answers, and decided to share his journey in hopes that it may make it easier for others along the way.
Randy spends his spare time writing articles, music and creating suggested processes to help others cope. Randy has appealed to over a million people with his message of hope, and believes that helping others is the path to long term healing.
Randy lives in Ontario with his wife and son and is a self-employed businessman.
Job Titles:
- Member of the Board of Directors
- Rebecca Mills Co - Founded TheILC through Her Lived Experience With Hereditary Connective Tissue Disorder Ehlers - Danlos Syndrome ( EDS ) and Is an Honorary Board Member
Rebecca Mills co-founded TheILC through her lived experience with hereditary connective tissue disorder Ehlers-Danlos Syndrome (EDS) and is an honorary board member.
Job Titles:
- Treasurer of the Board of Directors
- Board Director / Treasurer -
Most notable is his past involvement with the Cruisers Sports for the Physically Disabled who support the Halton and Peel Regions, and more recently, as Director and Treasurer of Oakville based ILC Charitable Foundation, whose focus is to improve the lives of 20% of children and families living with chronic pain. Roger Lapworth completed his education in England in the field of financial management and audit, and immigrated to Canada in 1974. He has held positions of vice president of finance and chief financial officer for local corporations for over 30 years. Since 1986, he has operated his own tax consulting business. Roger has served for two terms as Oakville Town Councilor, is also an audio engineer and is the founder of the Retro Rock Lounge, a non-profit organization that supports amateur musicians within the arts community. Roger joins the ILC Foundation as Director and Treasurer in recognition of the work being done to bridge gaps in care for children and families suffering with complex pain problems. Roger has lived in Oakville since 1997.
Salvatore was born with (spontaneous) Marfan syndrome. As a result, he has had multiple medical procedures, such as eye and chest surgeries. He also experiences chronic pain and other comorbidities associated with the invisible nature of this syndrome.
Salvatore holds a BA from Concordia University in Political Science with a Minor in Modern Chinese. His focus was primarily on international security and Canadian and American political philosophy. He is currently studying Therapeutic Recreation at Concordia.
He has worked as a Caregiver/Recreational Facilitator at the Centre d'Activités Récréatives et Éducatives (The C.A.R.E. centre) and as a Workplace Access Assistant at the McGill University Office for Students with Disabilities (OSD). He has previous experience teaching ESL, music, and philosophy, to children and adults. He has previously volunteered at the Montreal Children's Hospital and at kiki4kids, a satellite non-profit where Salvatore had originally collected patient testimonials.
His volunteer role as Narrative Curator at The ILC Foundation is to collect, edit, and share patient stories. Stories can be a diverse mix of medical, academic, and social experiences that serve to deepen the reader's understanding of the pervasiveness of chronic illness.
Sandy Bell-Murray has lived experience as the family member of someone with EDS. She is retired from a long career in the social service sector. Sandy worked primarily with the Ontario Public Service on the front line, in policy development and in management, mainly in youth and adult justice. She also taught social service courses at Canadore College in North Bay and developed course modules in counseling for distance learning. Her formal education is a Bachelor of Arts degree in Psychology.
Over the years, she developed a passion for learning about building personal resilience to manage stress and experimenting with different approaches. Currently employed as a freelance writer and workshop presenter, she has a strong interest in communication and training. Sandy is also an active member of Toastmasters International.
Job Titles:
- Board Director
- Executive Director
- Member of the Board of Directors
- President
- Founding Executive Director of the ILC Foundation
Sandy Smeenk is the founding Executive Director of The ILC Foundation, a position she has held since April 2010. With fifteen years of experience in community development and systems change, Sandy provides strategic leadership, focused on education, engagement, knowledge translation and advocacy in support of people living with chronic pain due to hereditary Ehlers Danlos Syndromes, Hypermobility Spectrum Disorder, and related conditions. Sandy's responsibilities include developing and implementing strategic and operational plans, designing, and evaluating programs, leading fundraising efforts, and is recognized by Patient Commando as a Canadian Women Changing Healthcare.
Job Titles:
- Board Director
- Community Health Worker
- Member of the Board of Directors
Tammy Stadt has worked as a Community Health Worker for twenty years with the responsibility for client and community engagement. Responsibilities included the coordination of non-paid human resources (Volunteers and Students), service delivery to young families, seniors and the homeless, with a focus of prevention and management of chronic diseases. Tammy has actively participated in governance, community initiatives, health promotion strategies and in policy development at the local, provincial and national level. She is a Certified Administrator of Volunteer Resources (CAVR) and authored articles for the Canadian Journal of Volunteer Management. Tammy has actively demonstrated her passion for improving the journey of the next person, in her roles as a founding Board Member of CSC Chigamik CHC, championing the unique needs of the Indigenous and Francophone communities and others facing barriers to access in North Simcoe County; A Peer Reviewer with Canadian Centre for Accreditation with a focus on accreditation of children's mental health, adult mental health and addictions, and primary health care organizations; Chair of the Town of Midland Accessibility Advisory Committee; A Patient/Caregiver Representative on the North Simcoe Ontario Health Team Steering Committee; A Support Group Leader for the Simcoe-York Ehlers-Danlos Syndrome Peer Support Group; Health Quality Ontario-Patient/Lived Experience Voice-Health Links Steering Committee, and a Panelist Speaker for HQT and Leadership Summits.
Tammy Stadt is a mother and grandmother living with hEDS and its many co-morbidities.
Tammy's favourite quote is by John Molson- "We are all part of a larger community that depends on each of us playing a part."
Job Titles:
- Member of the Board of Directors
Outside of insurance, Watson is an active volunteer with the West Ottawa Board of Trade, where he works to increase membership and retain existing members. He also serves on the board of directors for the charity VoiceFound. In addition, he served as Treasurer of the Canadian Chiari Association, that has closed its doors in 2020 with funds assigned to TheILC Foundation, where he now is a member of the Board.
Job Titles:
- Managing Director of the BC Chapter
Tracey Carmichael is the Managing Director of the BC Chapter, working with the chapter leadership team to help mobilize patients, families, and healthcare professionals to improve patient-centred care for heritable connective tissue disorders and Ehlers Danlos Syndromes in British Columbia. Tracey is employed as the Director of Institutional Research at the Justice Institute of British Columbia and has held senior management positions at UBC, BC Securities Commission and the Human Security Report Project. A double alumna from McGill University with a Bachelor of Arts in Psychology and Masters in Information Studies, Tracey embraces learning and regularly contributes to professional associations and patient voice initiatives.