Our Board

Board

SCN2A’s Board currently consists of a Director,  Treasurer and Secretary. Our directors contribute their valuable expertise on a pro bono basis. You can contact any of our board members by emailing info@scn2aaustralia.org 

The Board meets monthly and approves, monitors and reviews the organisation’s strategy, finance and budget.

Kris Pierce

Director

Dr David Cunnington

Treasurer

Ursula Delaney

Secretary

Scientific and Medical Board

Scientific and medical boards play a crucial role in advancing research, improving patient care, and advocating for the rare disease community. Specifically, the board provides expertise and guidance on scientific and medical matters related to SCN2A-mediated disorders for our organisations.

Katherine Howell

Ingrid Scheffer

Steve Petrou

Elizabeth (Emma) Palmer

Lynette Sadlier

Kris Pierce

After 14 year of diagnostic odyssey, Kris’s son Will was diagnosed with SCN2A. With a background in health and education Kris has utilised her skills to improve awareness and education of the global SCN2A community. She works alongside global SCN2A leaders, mentoring and working collaboratively to drive a global approach for SCN2A. 

Dedicated and accomplished Consumer and Patient Engagement Specialist with an extensive background in Rare Epilepsy advocacy and health promotion.

Proven track record of leading impactful initiatives, developing resources, and fostering collaboration within the healthcare sector.

A passionate advocate for families impacted by rare complex epilepsy.

Recognized for exceptional leadership, strategic vision, and contributions to improving caregiver and patient well-being.

David Cunningham

Dr David Cunnington is the parent of Will, a young adult with a gain of function SCN2A mutation. David has experienced firsthand the multiple phases and challenges SCN2A brings.

From the early days of uncontrolled seizures and life-threatening medical emergencies, to the challenges of managing a young adult with intellectual disability and autism spectrum disorder.

Dr. David Cunnington is an experienced sleep physician known for his clinical expertise in addressing complex sleep issues. He is dedicated to advancing sleep medicine through education, research, and advocacy. His media presence as a sleep expert, along with his role as a keynote speaker, highlights his commitment to promoting sleep health awareness.

Dr. Cunnington’s co-founding of SleepHub, an online sleep resource, underscores his dedication to public education.

With Masters degrees in healthcare management, clinical epidemiology and drug development, as well as experience as an investigator in clinical trials, Dr Cunnington offers unique insights into healthcare delivery and technology’s role in medicine.

Dr Cunnington has been an advisor to government and industry regarding novel medications and treatments in sleep medicine, and brings this experience and understanding of medical research to his role as a board member of SCN2A Australia. 

Ursula Delaney

Ursula Delaney, Secretary, is a director of a property management company with a well-regarded career.

She manages a portfolio of residential investments from first-time investors to corporate leasing.

After her daughter Eva was born and diagnosed with SCN2A encephalopathy, Ursula joined the board of SCN2A Australia. Ursula is working with Kris to try and bridge the gap in the treatment for our children and bring novel therapies to Australia.

A/Prof. Jenny Downs

A/Prof. Jenny Downs is Head of the Development and Disability Research Program at Telethon Kids Institute. Her current research programs include research on rare disorders. She also works with Down syndrome, autism and cerebral palsy. Dr Downs has led the development of outcome measures of functional abilities for severe disabilities and quality of life for children with intellectual disability. She has run clinical trials investigating developmental and physical activity interventions. Her work is guided by a vision that all children with disability and their families will live with better health and quality of life, ensuring that evidence-based interventions are available with valid measures measure their impact.