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.

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Dr Shari ParkerProminent Australians with albinism, including an MP, a popular singer and a doctor, have welcomed Australia’s first International Albinism Awareness Day on Saturday, June 13.

With a statistical likelihood of one in 17,000, Australia has more than 1300 persons with albinism. 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.

In November last year, the United Nations’ General Assembly adopted a resolution setting June 13 as International Albinism Awareness Day, an historic resolution that fixes albinism advocacy globally.

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When Sunshine Coast mother Amanda Collins discovered that her newborn son Mack was legally blind, she was overwhelmed with doubts about his future.

So, using the power of the Internet, Amanda threw herself into a journey of learning to find out as much as she could about her son’s condition and what was possible for him.

Mack, who was diagnosed with albinism at just four months of age, has pale, sun-sensitive skin, platinum blond hair and eyesight that is measured as legally blind. Albinism is a rare condition that affects just one in 17,000 persons in Australia.

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Lauren DawesFresh from this year’s season of “The Voice”, Lauren Dawes, an outstanding singer with albinism, will perform at the Albinism Fellowship of Australia’s conference in Sydney this weekend.

Lauren, a model, actress and singer whose soulful performance on 2013’s season of ‘The Voice’ won her a spot being mentored by Seal, will sing at the welcome address and the “after conference” party

A person with albinism - an albino - is unable to produce the pigment melanin, so they typically have fair skin and hair and a visual impairment, often reading in the ‘legally blind’ category. 

More than 230 people are expected at the Albinism Fellowship of Australia national conference with runs from October 11-13. The event attracts people with albinism, their families and friends, medical and ophthalmic professionals from throughout Australia as well as NZ, Fiji, Kenya, Ghana, Nigeria and the US.

Albinism Fellowship President Elizabeth Beales described Lauren as a powerful role model for young people and children with the same condition. “Lauren’s singing talent and performance’s on ‘The Voice’ have won her many fans both inside and beyond the albinism community,” she said.

More News...

  1. World experts reveal new albinism insights this weekend (08 October 2013)
  2. Fun event reaches out to Pacific Islanders with albinism (20 March 2012)