Meet the Board
Madelene Rich
President
Madelene brings extensive not-for-profit experience and knowledge having held senior administrative roles in medical research and aged care, as well as previously running her own small business. In her time on the board of CSA, she has served in various leadership positions, including President from 2018 to 2024, Secretary from 2000 to 2008, and Conference Committee member in 2024, 2018, and 2002.
Passionate about improving life outcomes for individuals with CHARGE syndrome, Madelene is dedicated to raising awareness and advocating for our community. She actively participates in consultations, working groups, roundtable discussions with peak bodies in the disability sector to highlight the challenges faced by people with CHARGE syndrome, particularly in healthcare, early intervention, education, employment, and housing.
Madelene's ultimate goal is to see the integration of a framework within the healthcare system that ensures all individuals with CHARGE syndrome receive care grounded in evidence-based best practices. As a mother to an adult son with CHARGE syndrome, she is deeply committed to this cause and the improvement of lives for people with CHARGE syndrome.
Annette Stocker
Vice President / Treasurer (NZ)
Annette rejoined the board in 2019 as she found she had more time to dedicate to supporting the aims of the Board and our New Zealand families. Annette comes from a corporate background and brings her professional expertise and acumen to this role and is strongly committed to connecting families and raising awareness of CHARGE syndrome throughout New Zealand. Annette Stocker resides on the South Island of New Zealand with her husband Tony and two children. Her daughter Aimee has CHARGE syndrome.
Felicity Dillon
Treasurer
With over 40 years of experience as a Finance Professional I am dedicated to driving meaningful change through strategic leadership, collaboration, and innovation. My focus has always been on creating impactful programs that empower communities, raise awareness, and promote sustainable growth for underserved populations.
With my role as Treasurer, I have a deep understanding of the challenges and opportunities within the charity sector, and my expertise includes grant reporting, fundraising, program development, partnership building, and implementing systems. Through my work, I strive to amplify the voices of those who need it most and build lasting relationships with donors, partners, and volunteers who share our vision for a better world.
Dr Liz Levesque
Education
Liz, General Manager of the Victorian Deaf Education Institute, has taught in the deaf, deafblind and multi-sensory impairment fields for several decades. Liz has a strong interest in communication and language development of children with CHARGE syndrome and is a passionate supporter of self-advocacy for children with CHARGE syndrome and other complex conditions.
Kelsey Dalton
Kelsey has been employed in the field of medical clinical research for 12 years. She is currently the Chairperson of Special Olympics Manukau Trust and on the Fundraising/Grant Applications subcommittee of the Upper North Island Trust.
Kelsey has been on the organising committees for two of the past CHARGE syndrome conferences, and she enjoys making good connections with New Zealand and Australian families. Kelsey is the parent of a 28 year old woman who has CHARGE Syndrome, Miss Sarah Dalton.
Sarah Dalton
CHARGE Syndrome Ambassador
Sarah promotes a positive attitude about living with a disability. In 2019, her story was featured on Attitude TV (NZ), where she gave the world an insight into living with CHARGE syndrome. Sarah is an experienced public speaker having presented at several Australasian CHARGE syndrome conferences, and advocates for Special Olympics NZ, including a speech to the NZ government.
For 2 years she was a member of a working advisory group advocating for inclusion in sport in NZ and presented the findings at an international conference in 2023. She is also an accomplished horse rider and has competed in Special Olympics at a national level.
A highlight of her career was an acting role on Power Rangers, playing the character Lily”. She currently works in digital communications.