Albinism is a genetic disease that results in lack of pigmentation in the skin, eyes and hair due to a defect in the production of melanin. This lack of pigmentation makes albinos more vulnerable to diseases such as cancer, as well as causing vision problems and high sensitivity to the sun. Even more troubling, in Africa, where the disease is misunderstood, people with albinism also face devastating and in many cases deadly social and psychological threats.
The good news is that there are social services, medical professionals and NGOs focusing on this most vulnerable segment of the African population, to bring education and public awareness to the disease, as well as much needed medical, social and economic resources to support sufferers of albinism.
An excellent example is the ‘White Ebony’ project, supported by the Gertler Family Foundation in the Democratic Republic of Congo (DRC). As part of this initiative, the photography book of the same name — “White Ebony” by DRC-born Patricia Willocq — offers an awesome visual journey through the lives of people with albinism in the photographer’s native land. Her goal was to present to the public the riveting stories, in pictures, of the unique plight of the DRC’s albinos, in order to foster not only understanding, but tolerance, love and acceptance of these individuals. While the situation for albinos in this country is better than in other places in Africa, they still find themselves stigmatized and isolated from society, and often far away from the medical treatment and services they require.
A press conference was held on the 3rd of June, 2015 to announce the launch of the book, “White Ebony,” as well as, the opening of a photo exhibition and celebration of the first International Albinism Awareness Day. In 2014, the United Nations set the date of June 13th for this international day of awareness. The White Ebony exhibit will be on display in Brussels at the Halles St Gery from 13 June until 27 July, 2015, after which it will move outside Belgium. The stunning photographs bring the viewer deep inside the emotions of this marginalized population, showing their courage, pain, joy, and triumphs.
The Gertler Family Foundation (GFF), a long-time funder of medical, social and economic programs that assist the Congo’s most at-risk populations, is a proud sponsor of the White Ebony project, assisting with the launch and publication of the book, and exhibits. It is not the first time. Previously, GFF supported the project in 2014, partnering with the Mwimba Texas Foundation on White Ebony to increase public awareness and increase access to medical and social services for Congolese albinos. In 2015, GFF also sponsored a project administered by Hopital du Cinquantenaire, whereby children received free photochromic eyeglasses that vastly improved their ability to learn, read and write and give them a much needed foundation upon which to be successful in life.