Elizabeth Beales
President
Elizabeth has OCA and Nystagmus was diagnosed with Albinism at the age of 40. Liz is passionate about empowering persons with Albinism and also creating an accurate and positive perspective of Albinism in the media. She has four adult children and lives in South Australia with her husband. Liz is the Australian representative on the Global Albinism Alliance after joining the pilot project in 2017.
Jennifer Rivett
Secretary
Jennifer was diagnosed with albinism as a 3-month-old. Until recently she had never met anyone else with albinism and now has found a whole new family. She is a strong advocate for equal opportunities for people with disabilities and strives to ensure that people are able to achieve their full potential in life. Jennifer lives in Darwin and is also the Northern Territory AFA representative.
Glen Bracegirdle
Treasurer
Glen has OCA and Nystagmus and was diagnosed with Albinism as a baby. Glen has an interest in technology and how it can be used to make life easier for people with albinism. He is from Victoria and is one of our previous conference convenors.
Annette Van Gent
Minute Secretary
Annette has OCA and nystagmus, and was diagnosed with Albinism as a baby. Annette is committed to working towards challenging myths and stereotypes about Albinism, and promoting an accurate and positive understanding of people with Albinism. Annette enjoys meeting and supporting other people with Albinism and their families. Annette lives in Sydney.
Sandra George
Special Projects and Webmaster
Sandra is grandmother to three children with Albinism. She is the Victorian AFA Representative and also currently the Webmaster. She is passionate about providing opportunities for the albinism community to meet, provide support, share information and most importantly to act as role models for children with albinism.
Ted Thomas
General Committee
Ted has OCA and Nystagmus and was diagnosed with Albinism as a baby. Ted enjoys meeting and assisting new parents of children with Albinism. Ted who lives in Sydney, is a previous President and has held executive positions for many years. He is the current NSW AFA representative.
Kieran O’Brien
General Committee
Kieran has ocular albinism. He believes in giving everything a go and has ben an excellent role model for our kids, through his tertiary study, career and involvement in team and outdoor sports. He was an important member of the 2017 conference committee and has been on panels at most conferences since.
Lucy Carpenter and Karin Boulton
General Committee
Lucy and Karin are two founding members of our EVYL group (Emerging Voices of Young Leaders). Lucy recently finished a communications degree in Victoria and now works as a Communications Coordinator and Karin is studying Physiotherapy at university in WA. Both are very active members of the 2024 Conference Committee, providing refreshingly new ideas on programming through “young eyes”!
Tamara Fish
General Committee
Tamara lives in South West Victoria, Aboriginal land of the Eastern Marr nations with her beautiful family including 16 year old Akira who has OCA, is legally blind, and a great ability to advocate for herself and others. Tamara has the desire to bring both the parent lens and youth voice to the work of AFA with Akira taking a keen interest (we are a package deal!). We strive to foster an inclusive and caring albinism community that embraces our diverse experience of albinism and life.
Ian Duffield
General Committee
Ian was diagnosed with albinism at birth. In 2020, he retired after practising as a solicitor for 50 years. He has 2 sons, aged 49 and 46, neither of whom has albinism. Ian believes that AFA can play a significant part in encouraging, informing and providing reassurance and inspiration to, those with albinism and their families.
Lucy Carpenter and Karin Boulton
General Committee
Lucy and Karin are two founding members of our EVYL group (Emerging Voices of Young Leaders). Lucy recently finished a communications degree in Victoria and now works as a Communications Coordinator and Karin is studying Physiotherapy at university in WA. Both are very active members of the 2024 Conference Committee, providing refreshingly new ideas on programming through “young eyes”!
We are seeking people to assist in the running of the AFA, if you have skills that you feel would be valuable to the fellowship or would simply love to give it a go, we want to hear from you. Contact us now!
AFA Committee
Phone: 1300 22 16 19
President: Elizabeth Beales Email
Vice President:
Secretary: Jennifer Rivett: secretary@albinismaustralia.org
Treasurer: Glen Bracegirdle Email
Minute Secretary: Annette Van Gent
Special Projects: Sandra George: albinismvic@albinismaustralia.org
Webmaster: Sandra George: webmaster@albinismaustralia.org
General Committee: Ted Thomas, Kieran O’Brien, Tamara Fish, Ian Duffield, Lucy Carpenter and Karin Boulton.
Conference Committee 2024: Emina Hubanic, Glen Bracegirdle, Karin Boulton, Lucy Carpenter, Tamara Fish, Sandra George. conference@albinismaustralia.org
Download AFA Constitution
The AFA stands for self advocacy and we are proud that 7 of our 9 committee members have albinism, one is a parent of a child with albinism and one a grandparent of 3 children with albinism.
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