Albinism

The Albinism Fellowship of Australia (AFA) http://albinismaustralia.org/ is a national, non-profit organization established in 2005. The fellowship is run by volunteers who all have been personally touched by albinism in some way. The AFA’s key purpose is to provide support, education and fellowship to those with albinism, parents of children with albinism as well as their families and friends. While the albinism community in Australia is only small, the AFA provides a united voice to encourage productive developments and support within business, government and media.

Sammy McCombe and Lucy CarpenterSammy McCombe and Lucy Carpenter

An initiative to highlight the achievements of people with albinism will tomorrow reach out through communities nation-wide as Australians celebrate the third World Albinism Awareness Day.

With a frequency of one in 17,000, more than 1300 Australians are affected by albinism, a genetic condition that arises from a lack of pigment in the skin, hair and eyes, typically causing pale skin, white hair and poor eyesight, often in the range of legal blindness.

Tomorrow, throughout Australia, children with albinism and their parents will use World Albinism Awareness Day to share with classmates their experiences of the world, why they avoid the sun and the challenges of limited vision.

Australians with albinism work in a wide range of professions, with members of the community including a State MP, a doctor, business owners, a professional singer and an astronomer.

In Geelong, two schoolgirls born with oculocutaneous albinism, Sammy McCombe, 12, and Lucy Carpenter, 14, recently launched an Instagram account to use fashion to raise awareness of the condition. The duo use it to model the latest clothing to show people that different is beautiful. Their Instagram account @Lucy_and_sammy has already attracted more than 4000 followers! “I have been very surprised at how many people loved our photos and gave us great feedback,” revealed Sammy (above, right).

Shari ParkerAs an international campaign to protect people with albinism gains steam, Australians affected by the genetic condition will gather to celebrate International Albinism Awareness Day on Monday, June 13.

More than 1300 Australians are affected by albinism, which has a frequency of one in 17,000 in this country. The genetic condition, which arises from 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.

Over the coming week, people with albinism will gather with friends and family throughout Australia including Perth, Adelaide, Melbourne, Sydney, Newcastle and Townville, to promote awareness of the genetic condition. Persons with albinism work in all areas of Australian life, from running businesses and working in the public sector to raising children and representing citizens in parliament.

However, In Africa, persons with albinism are regularly killed in countries including Malawi, Mozambique and Tanzania world where their body parts are valued in witchcraft. Superstition leads many to believe children with albinism bring bad luck.

John HarrisListen to  john Harris tell ABC Radio about growing up with albinism, days before the Albinism Conference in Cairns.    

John is among dozens of people with albinism heading to Far North Queensland this weekend (September 26 and 27) for the xixth biennial conference of the Albinism Fellowship of Australia. 

Click here to listen to John explain his experience of albinism and discuss the value of the conference with Phil Staley on Radio ABC Far North Queensland, on September 22, 2015

Thank you to ABC Radio for permission to use this recording.