2019 National Conference – Adelaide

The biennial Australian National Albinism Conference was held in Adelaide from Friday, August 23. to Sunday, August 25, 2019, at the Mercure Grosvenor Hotel Adelaide. This was a great venue, with all our conference rooms – catering for kids, teenagers and adults – on just one floor. Conveniently located opposite the Adelaide Railway Station and next to a tram stop on North Terrace, the hotel wass just a five-minute walk to Rundle Mall.

News release: August 25, 2019

Adelaide hosts myth-busting conference on Albinism this weekend

About 100 individuals and family members affected by albinism gathered in Adelaide this weekend for a national conference about the causes, challenges and achievements of this often-misunderstood genetic condition.

International and Australian speakers at the eighth national Albinism Conference dispelled common misconceptions about albinism which range from “all albinos have pink eyes” to the unlikelihood of an albino assassin as portrayed in The Da Vinci Code.

Albinism, a genetic condition caused by a lack of pigment in the skin, hair and eyes, is linked to pale skin, white hair and poor eyesight, often in the range of legal blindness. With an occurrence of one in 17,000, Australia has an estimated 1500 persons with albinism.

Albinism Fellowship of Australia President Elizabeth Beales said the truth about people with albinism was actually much more interesting than the ridiculous myths that abound. “Dan Brown’s novel, The Da Vinci Code, was just plain stupid – most people with albinism have very poor eyesight, which really limits your ability to succeed as an assassin,” she said.

“However, one of the great achievements of these conferences is our ability to showcase the incredible success that people with albinism have achieved in their professional and personal lives.”

Persons with albinism work in all areas of Australian life. AFA members include NSW State MP Gareth Wardsinger Lauren Dawes, a doctor, business owners and public service executives. Former Adelaide man, Professor Paul Delaney, who has albinism, is a leading astronomer in Canada.

With delegates and speakers from throughout Australia, New Zealand and the US, the biennial Albinism Conference ran from Friday, August 23, to Sunday, September 25, 2019, at the Mercure Grosvenor Adelaide Hotel on North Terrace.  Topics included navigating the NDIS; skin cancer and albinism; the latest research in genetics and vision; building resilience; martial arts for self-protection; and using the latest technology to get ahead.

As well as the formal conference presentations, including keynote speeches by US genetics expert Dr Murray Brilliant, leading eye specialist Associate Professor Celia Chen and child resilience specialist Dino Mennillo of OFTC, the conference included a comprehensive children’s program, including teenagers making a fashion tour of Adelaide’s op shops and using phone-based GPS apps to find their way around town.

Sponsors for the 2019 Albinism Conference included the Hackett Foundation, Torrens University, PMD Financial Advisers and the Department of Social Services, which provided a National Disability Conference Initiative Grant. In addition, many sponsors donated funds anonymously via PayPal, including school students, workgroups, friends and others.

Conference Keynote speakers

GENETICS KEYNOTE:

FRIDAY 2PM Afternoon session, and SATURDAY 9AM Keynote session

Dr Murray Brilliant, PhD
Senior Scientist, Director at the Centre for Human Genetics
Marshfield Clinic Research Foundation 

Dr Murray Brilliant is a world-renowned researcher on the genetics of human albinism and Director of the Centre for Human Genetics of Marshfield Clinic, Wisconsin, United States. He recently completed a research project on people with albinism in Tanzania that was covered on an international TV network. 
Dr Brilliant said his work in albinism started with a project that aimed to understand why mice come in different colours. “I began working with a cream-coloured mouse variant first described over 100 years ago,” he said. “I designed a novel method that led to the identification of the gene that was associated with the cream colour and discovered that it was also associated with the most common form of albinism in people (OculoCutaneous Albinism type 2 / OCA2). Subsequent work led to the identification of two more genes associated with albinism (OCA4 and HPS1, associated to the Hermansky-Pudlak Syndrome).
“Although I had known people with albinism since I was in high school, my laboratory work and my interaction with them have led to a deeper understanding of the issues that people with albinism face every day. This includes limitations in vision, susceptibility to skin cancer and social stigma. I have worked to try to understand the role of the various genes involved in albinism. This has led to two clinical trials with two different drugs aimed at improving vision.”
Click here to view a four-minute video interview with Dr Brilliant whose keynote presentation at the National Conference is certain to provide both useful and thought-provoking insights from the leading edge of global genetic research into albinism.
Click here to register to attend the conference

VISION KEYNOTE:

SATURDAY 10AM Keynote session

Associate Professor Celia Chen

Associate Professor Celia Chen
Consultant Ophthalmologist at the Department of Ophthalmology, Flinders Medical Centre and Flinders University

Celia completed her medical degree at the University of Adelaide followed by a Masters of Public Health and a PhD at Flinders University. She undertook her ophthalmology training in South Australia and proceeded to a clinical and research fellowship in Neuro-ophthalmology at the Wilmer Eye Institute, Johns Hopkins Hospital. Celia returned to Adelaide in 2007 following her fellowship and is a consultant ophthalmologist at the Department of Ophthalmology, Flinders Medical Centre and Flinders University. She is the recipient of both national and international scholarships and awards including the American Australian Education Fellowship, NHMRC National Institute of Clinical Studies fellowship and South Australian Science Excellence award.

RESILENCE KEYNOTE:

Keynote session, 11am Saturday

Dino Mennillo (BAppSC – Occupational Therapy)
is the Director of Occupational Therapy for Children (OTFC) and OTFC+, two clinic-based services located in the city of Adelaide and Mile End

Dino Mennillo specialises in working with children, adolescents and young adults with Sensory Integration issues, Autism Spectrum Disorders and complex developmental conditions. In his 20th year as an Occupational Therapist (OT), Dino has worked and trained in Sydney, Melbourne and Adelaide working in adult mental health, child and adolescent mental health and paediatrics. He has been the Director of OTFC for 14 years and is certified through the University of Southern California in the assessment and treatment of Sensory Integrative disorders.

Dino believes in the core OTFC values of Validating, Supporting, Encouraging and Inspiring clients and their families to reach their potential. His philosophy is ‘Good learners make lots of mistakes’ and encourages everyone to do something in life that they aren’t good at (like playing the guitar). Dino presentation will provide practical, experience-based advice about strategies about how parents can encourage resilience and resourcefulness in their children.

SATURDAY AFTERNOON SPEAKER

Behind the Wheel – Insights into bioptic driving

Belinda O’Connor, founder Bioptic Drivers Australia https://www.biopticdriversaus.com 

Bioptic driving is a method of driving that utilises both an individual’s general vision in combination with intermittent spotting through a small telescopic system to improve the sharpness of the driver’s far vision. The bioptic telescope is used in conjunction with a driver’s regular carrier lenses (prescription glasses). 

Belinda O’Connor, who founded Bioptic Drivers Australia (BDA) in 2017, will describe the lived experience of bioptic driving as well as the Australian regulatory landscape. Belinda started her bioptic driving journey in 2014 when she discovered through a Facebook group of her eyesight condition that people around the world and in Australia had used bioptics to drive for more than three decades. After researching the situation in Australia, she made contact with persons knowledgeable about bioptics for driving and learned a great deal about its policy and practice. 

As a career public servant with experience in policy development and implementation, Belinda uses her skills, knowledge and networks to set BDA’s strategic direction in consultation with a multidisciplinary team of Friends of BDA. Belinda is also a Future Shaper participant and member at the Disability Leadership Institute and a board member for Women with Disability ACT.