By: Karene Boos, founder ZeruZeru Simama Sasa!
ZeruZeru Simama Sasa! has two meanings. Literally, it means “People with Albinism Stand Up Now,” (encouraging them not to be afraid); secondarily, it can also mean “Stop Prejudice Against People with Albinism Now!”
ZeruZeru, Inc. is a non-profit 501c3 organization incorporated in the United States. ZeruZeru was started by attorneys Eric and Karene Boos in 2013 for the purpose of securing human rights of the poor and vulnerable in Tanzania–especially persons with albinism.
Albinism is a genetic condition that results in a lack of the production of the pigment melanin. This means that people with albinism are very sensitive to light and sun exposure. They are at risk for severe sunburns leading to skin cancers, other skin disorders and sun-damage thickening of the skin. People with albinism also have vision impairments related to the lack of melanin.
Beside the increased skin cancer risk, people living with albinism in Tanzania are living in fear for their lives. In Tanzania, those with albinism are at risk to be hunted, abducted and mutilated for their body parts for use in traditional medicine and mystical belief practices. A complete set of body parts from a person with albinism can bring in up to $75,000 on the black market, according to a 2009 report by the International Federation of Red Cross and Red Crescent Societies. The Government of Tanzania has taken important steps to tackle the problem of ritualistic violence against people living with albinism, but extra protection is still needed.
Often the families of children with albinism cannot provide security for their children in rural areas. The primary goal of ZeruZeru is to establish a sustainable, self-sufficient, safe-haven campus for children with albinism and some children with physical impairments. With the help of Helena Ntambulwa at Mary Mother of God Perpetual Help Center in Tanzania and her staff, ZeruZeru is currently caring for nearly 70 children.
The Center provides a safe environment for the children to learn, grow, play and be integrated into local life. The children are provided with access to education, general health care and daily preventive skin care. The Center also educates the families and friends of these children about the health risks associated with their lack of pigment and the importance of proper sun protection. Children often arrive at the Center with severe burns on their skin. Because of the lack of melanin, it is vital to their health that they wear UPF 50+ clothing that blocks 98% of all UV rays.
UVA rays, which penetrate the skin more deeply than UVB rays, contribute to and may even initiate the development of skin cancers. As opposed to UVB rays, UVA rays can also penetrate most fabrics.– Skin Cancer Foundation
We’re grateful to Coolibar for its commitment to helping protect our children by donating hats, gloves, long sleeve shirts and beautiful dresses and tunics. Beyond keeping them safe, it’s our job to help these children thrive. With UPF 50+ clothing, they can get out and play, learn and explore!