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.

Albinism Fellowship of Australia  President Elizabeth BealesAlbinism Fellowship of Australia President Elizabeth BealesNearly 1500 Australians with albinism will tomorrow – June 13 - recognise International Albinism Awareness Day by calling for greater government action on the plights of persons with albinism in sub-Saharan Africa.

With a frequency of about one in 17,000, an estimated 1470 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. Despite these challenges, 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.

Tomorrow, throughout Australia, children with albinism and their parents will use International Albinism Awareness Day to share with classmates their experiences of the world, why they avoid the sun and the challenges of limited vision. Many of the Albinism Fellowship of Australia adults are busy organising the bi-annual Albinism National Conference which this year is running in Adelaide from August 23-25.

Albinism Fellowship of Australia President Elizabeth Beales said its members also joined with their fellows globally to denounce ongoing attacks targeting persons with albinism in several countries in sub-Saharan Africa. “While these atrocities seem far away and inconceivable for most of us, we nonetheless are aware that one slight change in location would have changed our destiny,” she said.

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.