DEFEAT DUCHENNE CANADA - Key Persons
Al has served on the Defeat Duchenne Canada / Jesse's Journey board of directors since 2001. He and his wife Anne are parents of two boys, Dale and Dennis, who both faced Duchenne muscular dystrophy and passed away as young adults. As Al says, "we will not be happy till we defeat it." Al has been a volunteer with Defeat Duchenne Canada for more than 20 years, having met John and Jesse as they were on their journey across Ontario. He and Anne also joined Grandpa Bob on his 4,000km Walk for Louie in 2014.
Job Titles:
- National Manager, Philanthropy
Alison joined Defeat Duchenne Canada in March 2021. She comes to the organization with experience working on national fundraising campaigns and peer-to-peer events at the MS Society of Canada, ALS Canada, and Camp Quality Canada. Alison is thrilled to be bringing her extensive knowledge of fundraising strategy to join the small but mighty team at Defeat Duchenne Canada as their Manager of Philanthropy.
Job Titles:
- National Coordinator, Database
Fortunate to have experienced the wonderful world of philanthropy in both healthcare and education, Alison is excited to be joining the team at Defeat Duchenne Canada. She is intrigued by the science and art of building support for a wonderful cause in the community and dedicated to data integrity in that pursuit. Wife, mother, daughter, sister and friend, she enjoys camping in summer, curling in the winter and yoga all year.
Job Titles:
- Board Director
- Director
- Member of the Governance Committee
- Board Chair at the Institute for Performance & Learning
Brian has been the Board Chair at the Institute for Performance & Learning since November 2017, after serving as a Director at Large on the board for 2 years. The role of the board chair is to focus on what is best for I4PL and its members, facilitate good board leadership and governance and set the tone for the board meetings. The board chair works collaboratively with the Executive Director of I4PL.
Brian currently has overall responsibility for talent and culture at Capital One Canada. His team provides support in the following areas, diversity and inclusion, Human Resources risk, learning and development and talent acquisition. Brian holds an MBA from the Ivey Business School at Western University, the Certified Training and Development Professional and Certified Human Resources Leader designations. Brian has completed the Not for Profit Governance Essentials Program with the Institute of Corporate Directors (ICD) and Rotman School of Management and is currently enrolled in the ICD-Rotman Directors Education Program and pursuing the ICD.D designation.
Job Titles:
- Board Director
- Member of the Executive Committee
- Member of the Investment Committee
- Director / Managing Director, Scotiabank Global Banking & Markets
Dale has spent the past 17 years in the financial services industry, predominately in the area of equity derivatives. Prior to this Dale was an Armour Officer in the Canadian Armed Forces during which time he served on two NATO missions; Bosnia & Herzegovina in 1997 and Kosovo in 1999. Dale holds a Bachelor's degree in Chemical and Materials Engineering from the Royal Military College of Canada and an MBA from Queen's University. Outside the demands of work, Dale enjoys maximizing time with his wife and three children.
Job Titles:
- Member of the Duchenne Family Advisory Committee
Debra brings a depth of experience in fundraising, communications and community involvement to the Board. She has held senior business development, communications and sales roles over the past 20 years in the technology and training sector. Debra holds a Communications Studies degree from Brock University. In 2018, she shifted her career to the non-profit sector and her love of reading and community led her to her current role in Fundraising and Development at the Oakville Public Library.
Debra is a lifelong volunteer and longtime Ontario resident, with board experience supporting local and national organizations that build individual and community strength. Debra is committed and dedicated to sharing her empathy, expertise and making a positive impact as a member of Defeat Duchenne Canada's Board of Directors.
Job Titles:
- Board Director
- Member of the Governance Committee
- Director / GM, KeyAg Kubota
Doyle Steinke and his wife, Jody, have had the privilege of raising two beautiful boys along with their two sisters. Duchenne muscular dystrophy has been part of their son's journey and has changed the way they all view life.
They live on a small tranquil farm in central Alberta that is home to horses, cattle, rabbits, dogs, cats and us. Over several decades, Doyle has had the experience of a career in AgriBusiness that has kept life very busy - especially going back to school twice - first for an Agricultural Business Diploma and then an MBA. The Steinke family counts every day a blessing and try to live life to the fullest.
Job Titles:
- Member of the Research Funding Advisory Committee
- Director / Senior Scientist, Children 's Hospital of Eastern Ontario Research Institute
- Neuromuscular Specialist and Senior Scientist at the University of Ottawa, Ottawa, Ontario )
Hanns is a neurologist and clinical academic specializing in genetic neuromuscular disorders and rare diseases. He is a Senior Scientist at the Children's Hospital of Eastern Ontario (CHEO) Research Institute. He also holds appointments as Professor of Neurology in the University of Ottawa Faculty of Medicine and the Department of Medicine, Division of Neurology at The Ottawa Hospital. Hanns's clinical activities focus on clinical research and care of patients with rare neuromuscular disorders, including myotonic dystrophy (DM1), spinal muscular atrophy (SMA), muscular dystrophy and congenital myasthenic syndromes (CMS). He has a strong commitment to working with patients and patient organizations in Canada, as he has with organizations in Europe for many years.
Job Titles:
- Member of the Research Funding Advisory Committee
- Scientist in Genetics & Genome Biology at the Hospital for Sick Children ( SickKids ), Toronto, Ontario )
Job Titles:
- Member of the Research Funding Advisory Committee
- Child Health & Wellness Researcher at Alberta Children 's Hospital, Calgary, Alberta )
Job Titles:
- Member of the Research Funding Advisory Committee
- Professor in the Departments of Neurology, Medicine and Biochemistry at the University of Washington School of Medicine, Seattle, Washington, USA )
Dr. Jeff Chamberlain (Professor in the Departments of Neurology, Medicine and Biochemistry at the University of Washington School of Medicine, Seattle, Washington, USA)
Job Titles:
- Chairman of the Board
- Chairman of the Executive Committee
- Chairman of the Governance Committee
- Assistant Professor of Disability Studies at King 's University College
- Chairman of the Board & Director / Assistant Professor of Disability Studies, King 's University College, Western University
Jeff Preston, Ph.D., is an assistant professor of Disability Studies at King's University College at Western University where he teaches classes on disability, popular culture and policy. A long-time advocate and motivational speaker, in 2008 Jeff drove his electric wheelchair 650km, from London to Ottawa, to raise awareness about the lack of accessible transit in the province. Jeff is currently vice chair of the Committee of Adjustment at City Hall and vice chair of the leadership table for London 4 All, working group organized by the United Way of Elgin & Middlesex to complete recommendations generated by City Hall's poverty panel.
Job Titles:
- Member of the Research Funding Advisory Committee
- Chairman of the Jesse 's Journey Research Funding Advisory Committee
- Director & Chair, Research Funding Advisory Committee / Associate Scientist, Lawson Health Research Insiture
- RFAC Chair and Associate Scientist at the Lawson Health Research Institute, London, Ontario )
Dr. Lisa Hoffman is chair of the Jesse's Journey Research Funding Advisory Committee, leading a team of researchers, Duchenne parents, and external reviewers through the rigorous annual granting process.
Dr. Hoffman obtained her Ph.D. from the University of Saskatchewan in 2000. She was appointed as a Lawson Imaging Scientist in the Fall of 2009, and as Assistant Professor in the Departments of Medical Biophysics, Western University (Fall 2009) and Anatomy & Cell Biology, Western University (Spring 2010). Capitalizing on the breadth of her multidisciplinary experience, Dr. Hoffman's current research interests lie in Molecular Imaging and Cell Therapeutics for the treatment of both the skeletal and cardiac manifestations of Duchenne muscular dystrophy (DMD).
Job Titles:
- Member of the Research Funding Advisory Committee
- Professor in the Department of Medical Genetics at the University of Alberta, Edmonton, Alberta )
Job Titles:
- Member of the Duchenne Family Advisory Committee
Job Titles:
- Director / Co - Owner, Windmill Plastics Ltd.
Frank has served on the Board of Directors of Defeat Duchenne Canada / Jesse's Journey since 2013. In addition to his role on the Board, he is a member of the Research Funding Advisory Committee and of the Major and Planned Gifts Campaign Committee. Frank is currently the co-owner of Windmill Plastics Ltd., a privately held injection molding company where he heads up business development and leads a team of over 100 employees. Prior to being an entrepreneur, Frank worked for specialty pharmaceutical company Paladin Labs, where he held a number of leadership positions, including: Director of Consumer Healthcare, Vice President International Operations and Vice President Commercial Canada. Frank has also worked for global strategy consulting firm Oliver Wyman, where he led client and consultant teams in North America, Europe, Africa and the Middle East. His mandates focused on commercial and market entry strategy, cost reduction and strategic planning. Frank's diverse business experience also includes time as a Manager within the McDonald's franchisee network and also as a market researcher for global market research firm Ipsos. Frank holds a Bachelor's in Business Administration from Bishop's University and a Masters in Business Administration from Simon Fraser University.
Job Titles:
- Member of the Duchenne Family Advisory Committee
- Member of the Research Funding Advisory Committee
- Duchenne Family Advisory Committee Lead and Duchenne Dad from Windsor, Ontario )
Job Titles:
- Member of the Investment Committee
Job Titles:
- Board Secretary / Founder, Jesse 's Journey
Inspired by his son Jesse who was diagnosed with Duchenne muscular dystrophy at the age of 6, John Davidson founded Jesse's Journey in 1994. After two marathon walks that took him across Ontario with Jesse in 1995, and across Canada solo in 1998, John has remained an active part of the ongoing mission to Defeat Duchenne. John was just two years old when he came to Canada from Scotland. He enjoyed a 30-year career in broadcasting - first on radio in London, then with CBC Radio and Television in Vancouver. John is currently Secretary of the Jesse's Journey Board of Directors and maintains his ongoing role as office handy-man.
Job Titles:
- Member of the Duchenne Family Advisory Committee
Job Titles:
- National Coordinator, Administration & Donor Relations
Before joining the Defeat Duchenne Canada team, Kate has had multiple years of experience working as an administrator for clinical rehabilitation centres and charity organizations. She is thrilled to be continuing her professional and personal journey in the non-profit sector. She is excited to share her knowledge, experience and client-focused approach with all of our families, supporters and team here at Defeat Duchenne Canada.
Job Titles:
- Member of the Governance Committee
- Board Director & Chair of the Marketing Advisory Committee )
- Director / Director of Marketing, BGE Indoor Air Quality Solutions
Ken has a very close connection to Duchenne muscular dystrophy; his oldest son, Eli, has DMD. Ken was attracted to Defeat Duchenne Canada given the organization's singular focus on research to find a cure, and he wants to dedicate his volunteer time to such a worthy and personal cause. He has also volunteered as a director for Muscular Dystrophy Canada (MDC), heading up their marketing committee, and as a director at large for the Cochrane Humane Society.
Ken holds a BA from Brandon University and an MBA from the Warwick School of Business in Warwickshire, England.
Job Titles:
- Member of the Duchenne Family Advisory Committee
Job Titles:
- Member of the Business Development & Fundraising Committee
Job Titles:
- Member of the Duchenne Family Advisory Committee
Job Titles:
- Member of the Investment Committee
Job Titles:
- Member of the Investment Committee
Job Titles:
- Member of the Investment Committee
Job Titles:
- Director Marketing & Communications Director, Coaching Association of Canada
Natalie has a diverse background in strategic marketing and communications with over 25 years of management experience in sport, business development, and performing arts sectors. Currently, as the Marketing and Communications Director at the Coaching Association of Canada, Natalie works with partners of the National Coaching Certification Program (NCCP) to raise the skills, stature, and value of coaches in Canada. Natalie's marketing, event management, and media relations experience has focused on delivering successful events and creative campaigns in Canada and abroad. She previously held roles with the National Arts Centre Orchestra, as well as with organizing committees of the Canada Games, the Commonwealth Games, the Olympic and Paralympic Games, and the Blue Nose International Marathon. She currently serves as Vice-Chair of Volunteer Ottawa and is a 20-year participant of the CIBC Run for the Cure. A native of Ottawa, Natalie holds a B.A. from St. Francis Xavier University. A passionate sports fan and lover of the arts, she also remains active as a volunteer, athlete, and coach in her community.
Job Titles:
- Member of the Duchenne Family Advisory Committee
- Member of the Research Funding Advisory Committee
- National Vice President, Research, Advocacy & Education
- Staff - National Vice - President, Research, Education & Advocacy )
Nicola is the proud mother of two children, her eldest son Owen is a 14-year-old with Duchenne muscular dystrophy. Shortly after her son's diagnosis in 2013, she started a patient organization Stand for Duchenne Canada dedicated to advocating for access to medicines in Canada. A few years ago, Nicola made the difficult decision to leave a 15-year pharmaceutical career in medical affairs to focus on supporting the Canadian Duchenne community. In 2019 Nicola joined forces with Jesse's Journey, Canada's leading Duchenne organization, to continue her work on driving a research and advocacy strategy in Canada.
She continues to promote partnership and collaboration within medical, pharma, government, and patient organizations to improve access to the best care and medicines for families living with Duchenne. Nicola works closely with national and international groups as an investigator for the Neuromuscular Disease Network for Canada (NMD4C), a member of the International Duchenne Community Advisory Board (CAB), and as a contributor to the Canadian Neuromuscular Disease Registry (CNDR).
Job Titles:
- Chief Executive Officer
- Member of the Business Development & Fundraising Committee
- Member of the Executive Committee
- Member of the Governance Committee
- Member of the Investment Committee
- Staff - Chief Executive Officer
Perry is passionate about serving the philanthropic sector. With 25 years of experience working in philanthropy, Perry has spent most of it working with children's health organizations from local foundations to worldwide charities. He's led teams in Canada and the US, working on programs that have raised hundreds of millions of dollars for children's hospitals and related foundations. Perry is no stranger to Defeat Duchenne Canada (formerly Jesse's Journey). During the 1995 walk across Ontario, he volunteered to raise awareness and funds for Duchenne muscular dystrophy. Perry joined Defeat Duchenne Canada in 2018.
Job Titles:
- Board Director
- Member of the Executive Committee
- Member of the Governance Committee
- Director / Retired Broadcaster
Peter is a retired broadcaster who has been on the Defeat Duchenne Canada / Jesse's Journey team since 1998. He has served as President of the Board and currently sits as a Board Member and a member of the Executive Committee.
Job Titles:
- Member of the Duchenne Family Advisory Committee
Job Titles:
- Member of the Duchenne Family Advisory Committee
Rebekah Kember is a graduate of the University of Toronto with a degree in Molecular Biology and Biotechnology. Having a brother with Duchenne muscular dystrophy, her passion has always been to understand the biology of the disease. Her work with Defeat Duchenne Canada focuses on developing educational resources and tools for families, patients and the community.
Job Titles:
- Board Director
- Member of the Business Development & Fundraising Committee
- Member of the Governance Committee
- Director / Rector, St Aidan 's Church, London
Ordained in 1997 in the diocese of Eastern Newfoundland and Labrador, Kevin has been a priest in the diocese of Huron since 1998. Kevin has served in the Parish of Labrador West, NL; St Marks by-the-Lake Tecumseh, ON; and is currently the Rector of St Aidan's Church London, ON. Kevin earned a Bachelor in Education degree from Memorial University of Newfoundland, a Master of Divinity Degree from Huron University, and a Doctorate in Ministry from McCormick Theological Seminary. His thesis research was focused on faithful baptismal response in interfaith settings. Kevin is married to Catherinanne, who is the Director of Campus Ministry at Brescia University, and a chaplain in the Royal Canadian Naval Reserve. Kevin is a loyal Habs fan, prays for the return of Les Expos, and has learned what suffering looks like from being introduced to the Detroit Lions by Rob! Kevin is an avid reader, loves being involved in the community, and enjoys an appropriate adult beverage with friends. Fun fact: In 2019 Kevin preached for 55 Hours without sleep.
Job Titles:
- Member of the Executive Committee
- Member of the Governance Committee
- Board Director and Treasurer )
- Director & Treasurer / Partner, MNP LLP
As partner of MNP in Kitchener, Ontario Richard works in the Assurance and Accounting group with private enterprises. He's also the regional leader of the Indigenous Services niche, focusing on First Nations & Indigenous organizations, communities, not for profit entities and business enterprises. Richard is a graduate of the University of Lethbridge with a Bachelor in Management. Richard and his wife Amy have lived in Ontario for 10 years. The have two children (Ben & Lexie). Ben was diagnosed four years with Duchenne MD. Richard joined the Board of Defeat Duchenne Canada in January 2022 and is serving as Treasurer.
Job Titles:
- National Director, Strategic Partnerships
Rick began in radio where he had the privilege of meeting John Davidson. After a lengthy career where he worked his way up to senior management, Rick was approached by John to take on a new challenge as Managing Director of Defeat Duchenne Canada. Rick feels it has been a privilege and honour to be part of this team for the past 13 years.
Rochelle ten Haaf National Director, Marketing & Stakeholder Engagement With more than 13 years of experience in both Canada and the UK, Rochelle ten Haaf is passionate about working in the non-profit sector. She has helped countless charities turn consideration into action through the power of marketing and communications and looks forward to bringing the same enthusiam to defeat Duchenne muscular dystrophy at Defeat Duchenne Canada.
Job Titles:
- Member of the Investment Committee
Job Titles:
- Chairman of the Investment Committee
- Chairman - Volunteer )
Job Titles:
- Director Marketing Specialist, Metroland Media
Ted has been proudly associated with Defeat Duchenne Canada / Jesse's Journey since 2003 through a charitable event in the Burlington area called Eric's Amazing Race. This family run event has generated approximately $215,000 for Duchenne muscular dystrophy research over the past thirteen years. He and his wife Heather are committed to working to ‘Defeat Duchenne' on behalf of their nephew Eric and the many other boys they have had the privilege of meeting through the years.
Ted is proud to be a Defeat Duchenne Canada board member since January 2015, and looks forward to advancing our mission to eradicate this disease. In addition to his involvement with Defeat Duchenne Canada, Ted has spent the past twenty six years with Metroland Media in the advertising field, specializing in print and digital marketing solutions. He is a proud father of three boys and in his spare time is an avid hockey fan and love music. Ted thanks John and Jesse Davidson for their inspiration.