Notre personnel
Nicola Worsfold
Chef de la direction
Nicola Worsfold
Nicola Worsfold
Chef de la direction
Nicola is the proud mother of two children; her eldest son, Owen, has 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.
Elle continue à promouvoir le partenariat et la collaboration au sein des organismes médicaux, pharmaceutiques, gouvernementaux, ainsi qu’avec les patients, afin d’améliorer l’accès aux meilleurs soins et aux meilleurs médicaments pour les familles vivant avec la maladie de Duchenne. Nicola travaille en étroite collaboration avec des groupes nationaux et internationaux en tant que chercheuse pour le Neuromuscular Disease Network for Canada (NMD4C), membre de l’International Duchenne Community Advisory Board (CAB) et contributrice au Registre canadien des maladies neuromusculaires (RCMN).
Rick Moss
Interim National Director, Philanthropy
Rick Moss
Rick Moss
Interim National Director, Philanthropy
Rick a débuté à la radio où il a eu le privilège de rencontrer John Davidson. Après une longue carrière où il a gravi les échelons jusqu’à la haute direction, Rick a été approché par John pour relever un nouveau défi en tant que directeur général de Vaincre Duchenne Canada. Rick estime que c’est un privilège et un honneur de faire partie de cette équipe depuis les 13 dernières années.
Jennifer DiRaimo
National Director, Research & Education
Jennifer DiRaimo
Jennifer DiRaimo
National Director, Research & Education
Jennifer DiRaimo is the Director of Research and Education at Defeat Duchenne Canada. She is a master’s-trained genetic counsellor, board-certified through the Canadian Association of Genetic Counsellors (CAGC).
Jennifer is deeply dedicated to improving the lives of individuals and families affected by rare diseases. She brings over six years of experience in the non-profit sector, with expertise spanning research, education, leadership, patient support, and advocacy. In addition, she has more than 15 years of clinical experience as a genetic counsellor, having worked collaboratively within diverse healthcare teams.
Her work is grounded in a strong commitment to serving patients and their families and in research with a focus on translating scientific advances into meaningful, real-world impact.
Rosalind O’Connell
National Director, Advocacy
Rosalind O’Connell
Rosalind O’Connell
National Director, Advocacy
Rosalind O’Connell is a healthcare advocacy and communications leader with more than two decades of experience spanning strategic advocacy, public affairs, communications and stakeholder engagement.
She specializes in building and leading integrated advocacy, communications and government relations campaigns, with a particular focus on improving timely and equitable access to treatments and care for a variety of disease communities. She has a proven track record in helping patient organizations, patients and caregivers translate lived experience into coordinated advocacy efforts that have directly influenced policy decisions.
During her career, Rosalind has also served as the national communications and public affairs lead for a physician association and directed advocacy and public relations programs for clients at several public relations agencies and a leading global provider of commercialization services to the life sciences industry.
Rosalind holds a Bachelor’s degree in English and Humanities from York University and is a graduate of the Corporate Communications program at Seneca College.
Rochelle ten Haaf
National Director, Organization Marketing & Communications (Part Time)
Rochelle ten Haaf
Rochelle ten Haaf
National Director, Organization Marketing & Communications (Part Time)
With over 17 years of experience in the non-profit sector across Canada and the UK, Rochelle ten Haaf is a passionate and strategic marketing and communications professional. She has helped numerous charitable organizations turn awareness into action through compelling storytelling and mission-driven engagement. Rochelle is proud to bring that same dedication and energy to the fight to defeat Duchenne muscular dystrophy.
Bobbi Vasher
National Director, Program Marketing & Communications
Bobbi Vasher
Bobbi Vasher
National Director, Program Marketing & Communications
Bobbi brings over 15 years of experience in the non‑profit sector, with a diverse background spanning social work, education, fundraising, and communications.
Guided by a deep commitment to creating positive change, she offers a unique blend of compassion, strategic insight, and creative vision to every project she takes on. Known for her collaborative spirit and genuine care for the communities she serves, Bobbi approaches her work with enthusiasm and heart.
At Defeat Duchenne Canada, she co-leads marketing and communications initiatives that are compassionately and strategically developed to bring us closer to a day when everyone living with Duchenne has access to the treatments and care they deserve.
William Marchand
National Coordinator, Education, Engagement, & Support
William Marchand
William Marchand
National Coordinator, Education, Engagement, & Support
With a decade of experience in the non-profit and public sectors, William brings a deep commitment to health equity, community engagement, and compassionate support. He holds a diploma in gerontology and a honours degree in therapeutic recreation. He has worked across various health sectors, including dementia care, HIV services, substance use support, and complex medical conditions.
For the past six years, William has focused on education, engagement, and support, helping individuals, families, and communities navigate healthcare systems with dignity and inclusion. His work is grounded in lived experiences and best practices, ensuring programs are both person-centred and impactful.
William is excited to bring his knowledge and passion to Defeat Duchenne Canada, supporting a mission that drives meaningful change across the country. He is proud to be part of a team that is making a lasting difference in the lives of those affected by Duchenne muscular dystrophy.
Rafaela Fernandes
National Administrator
Rafaela Fernandes
Rafaela Fernandes
National Administrator
Originally from Brazil, Rafaela is a young professional who is passionate about helping others and fighting for the causes she believes in. She has spent the past few years finishing her Business Degree at Lambton College and working with their research department. Outside of work, you can often find Rafaela spending time with her loved ones, reading, and playing tennis.
Nos membres du conseil d’administration
Brian Atkinson
Chair of the Board
Associate Dean, Industry Training, Centennial College
Oshawa
(Ontario)
Brian Atkinson
Brian Atkinson
Chair of the Board
Associate Dean, Industry Training, Centennial College
Brian is a senior academic and human capital leader with over 30 years of international and domestic progressive experience with a demonstrated ability to lead academic and human resources functions as a business; by setting academic and people strategies that are aligned to business goals.
A self-described lifelong learner, Brian holds an MBA from the Ivey Business School at Western University, the Institute of Corporate Directors (ICD.D), Certified Training and Development Professional and Certified Human Resources Leader designations. Brian is the past Board Chair of the Institute for Performance and Learning, a national not-for-profit member driven organization for professionals supporting learning and performance in the workplace.
Jeffery Preston
Past Chair of the Board
Professeur adjoint en études sur l’incapacité, King’s University College, Western University
London
(Ontario)
Jeffery Preston
Jeffery Preston
Past Chair of the Board
Professeur adjoint en études sur l’incapacité, 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, a working group organized by the United Way of Elgin & Middlesex to complete recommendations generated by City Hall’s poverty panel.
Niki Kemeny
Secretary
AI-Media
Toronto,
(Ontario)
Niki Kemeny
Niki Kemeny
Secretary
AI-Media
Niki works in event production and training. After several years in television and theatre, Niki spent more than a decade touring with Cirque du Soleil in production management, organizing performers, crews, and gear all over the world. She has also worked recently in media accessibility, training closed captioners. Niki has an MA (Western), B Ed (UBC), and BA Hons in English, which she made good use of while teaching English at Fanshawe College and at other institutions, and continues to make use of, attempting to best crosswords. After many years on the road, she’s happy to be largely working from home, where she can spend time with her partner, Tyler, and their cats, Kingsley and Martin.
Richard Beatty
Treasurer
Associé, MNP LLP
Kitchener
(Ontario)
Richard Beatty
Richard Beatty
Treasurer
Associé, MNP LLP
As a 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’s in Management. Richard and his wife Amy have lived in Ontario for ten years. They have two children (Ben & Lexie). Ben was diagnosed four years ago with Duchenne Muscular dystrophy. Richard joined the Board of Defeat Duchenne Canada in January 2022 and serves as our Treasurer.
Tom Cappelli
Directeur
Retired McDonald’s Franchisee
Magog
(Québec)
Tom Cappelli
Tom Cappelli
Directeur
Retired McDonald’s Franchisee
Tom has a close connection to Duchenne muscular dystrophy as his 28-year-old son Aidan was diagnosed at an early age.
Tom retired as a successful McDonald’s restauranteur in 2017 after more than four decades in business with 13 McDonald’s locations across Quebec. During his business career, Tom and his wife Karen were generous community advocates and fundraisers for various charities. In 2004, after Aidan’s diagnosis, Tom was introduced to Jesse’s Journey, now Defeat Duchenne Canada, and was moved to support the vision of a future without Duchenne. Tom began his term on the Board of Directors in June 2022.
John Davidson
Directeur
Fondateur, Le Rêve de Jesse
London
(Ontario)
John Davidson
John Davidson
Directeur
Fondateur, Le Rêve de Jesse
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 (now known as Defeat Duchenne Canada). After two marathon walks—across Ontario with Jesse in 1995 and across Canada solo in 1998—John has remained an active part of the ongoing mission to end 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.
Perry Esler
Directeur
Interim CEO, Georgian Bay General Hospital Foundation
Huntsville,
L'Ontario
Perry Esler
Perry Esler
Directeur
Interim CEO, Georgian Bay General Hospital Foundation
Perry has spent 28 years in senior leadership roles across the charitable sector, supporting healthcare, children’s causes, hospital foundations, and disease-focused organizations throughout Canada and the United States. Inspired by the impact of Jesse’s Journey and the vision of John and Jesse Davidson, he has dedicated his career to advancing philanthropy and has helped raise hundreds of millions of dollars for important causes. A former member of the Defeat Duchenne Canada leadership team, Perry is proud to return as a Board member and continue supporting the organization’s mission to fund research and help defeat Duchenne.
Ella Korets-Smith
Directeur
Managing Director, EKS Ventures
Toronto,
L'Ontario
Ella Korets-Smith
Ella Korets-Smith
Directeur
Managing Director, EKS Ventures
Ella Korets-Smith, MSc, MBA, is a biotechnology executive, company builder, entrepreneur, and board director with more than 20 years of experience advancing health innovation. She has led strategy, business development, licensing, fundraising, and commercialization across therapeutics, vaccines, gene therapy, regenerative medicine, and medical devices. Ella has helped raise private and non-dilutive capital, build companies and partnerships, and guide organizations through growth and strategic change. Ella joined the DDC board because she is passionate about translating innovation into patient impact, strengthening Canada’s life sciences ecosystem, and supporting mission-driven organizations through governance, fundraising, and investment stewardship.
Dre Laura McAdam
Directeur
Physician Director of Ambulatory Care, Holland Bloorview Kids Rehabilitation Hospital
Toronto,
L'Ontario
Dre Laura McAdam
Dre Laura McAdam
Directeur
Physician Director of Ambulatory Care, Holland Bloorview Kids Rehabilitation Hospital
Dr. Laura McAdam is a clinician-scientist and Physician Director of Ambulatory Care at Holland Bloorview Kids Rehabilitation Hospital. Throughout her career, she has been dedicated to improving health, quality of life, transition and psychosocial well-being of individuals living with Duchenne through clinical care, research, and family-centred advocacy. Her work spans clinical trials, standards of care, patient-reported outcomes and initiatives that address the social challenges faced by individuals with DMD. Dr. McAdam was inspired to join the Board because of her passion for supporting the Duchenne community and her commitment to advocating for equitable access to emerging therapies and high-quality care.
Eric Morden
Directeur
BSc Biology; Minor in Disability Studies
Oakville
(Ontario)
Eric Morden
Eric Morden
Directeur
BSc Biology; Minor in Disability Studies
I am a recent graduate of Carleton University where I received a Bachelor of Science Degree in Biology with a minor in Disability Studies. I also have Duchenne muscular dystrophy, and I have been a part of the Defeat Duchenne Canada family since I was 4 years old. I was inspired to join the board because I think that my lived experience as a person with DMD would be invaluable, and I am very passionate in helping improve the lives of others with DMD. Apart from my role on the board, I am also a member of the Duchenne Family Advisory Committee and the Advocacy Committee.
Natalie Rumscheidt
Directeur
Marketing & Nutrition Director, Egg Farmers of Canada
Ottawa
(Ontario)
Natalie Rumscheidt
Natalie Rumscheidt
Directeur
Marketing & Nutrition Director, Egg Farmers of Canada
Natalie has a diverse background in strategic marketing and communications with over 30 years of management experience in consumer marketing, business development, sport, and performing arts sectors. Natalie leads the consumer marketing strategy for the Egg Farmers of Canada (EFC) as their Marketing & Nutrition Director and has previously held roles with the Coaching Association of Canada and the National Arts Centre Orchestra. A native of Ottawa, Natalie is a passionate sports fan, lover of the arts, and remains active as a volunteer, athlete, and coach in her community.
Kadey BJ Schultz
Directeur
Founder and Managing Partner, Schultz Law Group LLP
Toronto,
(Ontario)
Kadey BJ Schultz
Kadey BJ Schultz
Directeur
Founder and Managing Partner, Schultz Law Group LLP
Kadey is the Founder and Managing Partner of Schultz Law Group LLP, an industry leading anti-fraud, white collar crime, insurance law firm based out of Toronto.
Schultz Law Group LLP acts as advisors to insurers and self-insured entities, anticipating and managing risk, investigating and prosecuting against insurance fraud, and defending all variety of insurance claims.
Kadey has been honoured with peer and industry acknowledgements, including the Lexpert Zenith Mid-Career Excellence Award, the Lexpert Rising Stars Leading Lawyers under 40 Award, the Lexpert US/Canada Litigators to Watch, as well as the Canadian Defence Lawyers’ Exceptional Young Lawyer Award. In 2024, she was an awardee for both the Ontario Volunteer Service Award, and the Women in Insurance Award. Kadey has been ranked as a Best Lawyer in Canada for Insurance Law since 2019.
In addition to her robust consulting, investigation and litigation practice, Kadey was a professor at the University of Windsor Faculty of Law, teaching the Lawyer as Conflict Resolver, the Professional Identity and Legal Skills (PILS) and the Business of Law courses. She has been Guest Faculty with the Education and Development Bureau of the OPP, The Ontario Police College and the Toronto Police Services. Early in her career, she was a professor with Brock University, having designed and taught the first Conflict Management in Policing university course in Canada with the Criminal Justice and Policing Bachelor of Arts program.
Being of service defines and guides Kadey. She has been a Director of Holland Bloorview Kids Rehabilitation Hospital Foundation for several terms. She also served on the Board of the Medical Legal Society of Toronto, and is a founding board member of Laughter Heals, a Canadian Social Enterprise committed to raising funds and awareness for various causes. Since 2012, Kadey’s primary fundraising focus is to raise funds and advocate in an effort to change the world for people with Duchenne Muscular Dystrophy, including her son Emery. She is honoured to serve on the Board of Defeat Duchenne Canada.
As a lawyer, mother, mentor, educator and thought leader, Kadey feels privileged to engage with her community and industry.
Tushar Shakya
Directeur
Chief Operating Officer, Canadian Cardiovascular Society
Toronto,
(Ontario)
Tushar Shakya
Tushar Shakya
Directeur
Chief Operating Officer, Canadian Cardiovascular Society
Tushar Shakya is a senior nonprofit executive with a strong track record in strategic leadership, stakeholder engagement, and organizational growth across Canada’s healthcare and research sectors. With extensive experience at the Canadian Institutes of Health Research, Mitacs, and the Canadian Cardiovascular Society, he has played a pivotal role in advancing national health priorities through policy, funding programs, and partnerships. Tushar brings a systems-thinking mindset and a commitment to collaborative, mission-driven leadership, with a passion for improving outcomes for individuals and families affected by complex health conditions.
Doyle Steinke
Directeur
Inventory Controller, Future Ag Inc.
Red Deer
(Alberta)
Doyle Steinke
Doyle Steinke
Directeur
Inventory Controller, Future Ag Inc.
Doyle Steinke et sa femme, Jody, ont eu le privilège d’élever deux beaux garçons ainsi que leurs deux sœurs. La dystrophie musculaire de Duchenne a fait partie du parcours de leur fils et a changé leur façon de voir la vie.
Ils vivent sur une petite ferme tranquille dans le centre de l’Alberta, abritant chevaux, bétail, lapins, chiens, chats et eux. Au cours de plusieurs décennies, Doyle a gagné son expérience dans le domaine de l’agro-industrie, ce qui l’a tenu très occupé. Il est pourtant retourné deux fois aux études, d’abord pour obtenir un diplôme en commerce agricole, puis un MBA. La famille Steinke considère chaque jour comme un cadeau et essaie de vivre pleinement sa vie.
Bonnie Wooten
Directeur
Children’s Hospital – London Health Sciences Centre
London
(Ontario)
Bonnie Wooten
Bonnie Wooten
Directeur
Hôpital pour enfants du London Health Sciences Centre
Bonnie Wooten is a registered nurse, project consultant and shared decision-making implementation consultant/decision coach at Children’s Hospital – London Health Sciences Centre (LHSC). During her career, she has worked in various professional leadership capacities in both acute care and community settings, focusing on women’s and family health. Bonnie obtained her undergraduate degree from Western University and her graduate degree from Queens University.
Because of her background, she brings an understanding of policy development, consultation, and leadership needed to support internal and regional projects. As a Shared Decision-Making coach, she works with pediatricians and other health care professionals internally and provincially, facilitating processes and strategies to address the pros and cons, risks and benefits of family and patient choice. She brings knowledge of the health care system and its complexities, along with what is needed to impact outcomes positively.
Throughout her career, she has developed strong interpersonal and business relationships that maintain effective working relationships. She is client and customer-focused and very much aligned with the goals and focus of Defeat Duchenne Canada. She has solid organizational leadership and decision-making skills that will immediately contribute to the organization.
Leandra Wells
Directeur
Founder and CEO, BrightHive Innovation Group
Toronto,
L'Ontario
Leandra Wells
Leandra Wells
Directeur
Founder and CEO, BrightHive Innovation Group
Leandra Wells is a Healthcare Executive, General Manager, and Board Director with a PhD in Molecular Biology and more than 20 years of leadership experience across the pharmaceutical industry, including senior roles with GSK, Johnson & Johnson, and Galderma. Having worked in one of the world’s most highly regulated industries, she has led organizations through business growth, innovative therapy launches, large-scale digital and AI-enabled transformation, and the implementation of strong operational governance and risk management practices.
Through close relationships with families affected by Duchenne muscular dystrophy, Leandra has witnessed both the challenges of the disease and the remarkable advances being made through research and new therapies. She joined the Defeat Duchenne Canada Board to help advance the organization’s mission and support continued progress for patients and families.
Nos membres du comité
Comité consultatif Duchenne pour les familles
Lorrie Power (NS) – Duchenne Family Advisory Committee Chair and Mother
Kerri Denysiuk (Sask.) – mère
Nicole Mathison (Sask) – mère
Kasha Mitton (C.-B.) – mère
Darlene Morden (Ont.) – mère
Eric Morden (Ont.) – jeune adulte atteint de dystrophie de Duchenne
Rachael Witzke (ON) – Mother
Nicola Worsfold (ON) – Mother
Comité consultatif sur le financement de la recherche
- Dre Lisa Hoffman (présidente du CCFR – scientifique au Lawson Health Research Institute, London [Ontario])
- Dre Natasha Chang (professeure adjointe au département de biochimie de l'Université McGill, Montréal [Québec])
- Dr Eric Hoffman (doyen adjoint de la School of Pharmacy and Pharmaceutical Sciences, Binghamton University – SUNY; cofondateur et PDG de ReveraGen Biopharma; cofondateur et vice-président d'AGADA Biosciences et confondateur et président de TRiNDS LLC)
- Dr David L. Mack, PhD (professeur, Institute for Stem Cell and Regenerative Medicine, University of Washington)
- Dre Jean Mah (spécialiste neuromusculaire pédiatrique et chercheuse principale à l’Alberta Children’s Hospital, Calgary [Alberta])
- Dre Toshifumi Yokota (professeure au département de génétique médicale de l’université d’Alberta, Edmonton [Alberta])
- Dre Amanda Yaworski (spécialiste neuromusculaire au Centre hospitalier pour enfants de l’est de l’Ontario [CHEO], Ottawa, [Ontario])
Comité de direction
Brian Atkinson (Board Chair)
Natalie Rumscheidt (Board Vice Chair)
Richard Beatty (Board Treasurer)
Comité de gouvernance
Tom Cappelli
Doyle Steinke
Leandra Wells
Bonnie Wooten
Comité d’investissement
Stephen Duench (Volunteer)
Mike Morden (bénévole)
James Knowles (Volunteer)
Matthew Hunter (bénévole)
Dale Cheeseman (Volunteer)
Mike Sheffar (bénévole)
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