The birth of a child with albinism drove Emily Urquhart to discover its medical and cultural fallout
Brian Bethune April 4, 2015 So I read the article "Beyond the Pale" & I think everyone else Albinism or not should be reading this article too..... It open one's eye (A person without Albinism) to understand beyond the myth and the folklore of what a person with Albinism can and can not do..... Here's the link if you haven't read it yet.......
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THE Christmas wish of a young Sydney pianist will come true on Christmas Eve, when 11-year-old Matthew Zhou will perform at Carols by Candlelight with Wicked star Lucy Durack. Legally blind, Matthew has oculocutaneous albinism, a genetic condition that affects one in 20,000 Australians, and has been working with Vision Australia since he was just three months old. His mum Jia said that when Matthew was younger he dropped things easily, so his Vision Support Teacher recommended he learn to play the piano to strengthen his fingers. Now musically gifted, he plays the piano, marimba, drums and is a member of two bands — but nothing is more exciting than his upcoming carols performance. “He is very excited and thinks it is very cool!” Ms Zhou said. “He is so happy to have such a big role in Vision Australia’s night of nights.” Vision Australia is such a big part of Matthew and his twin sister Annabelle’s lives that, when they turned eight, instead of presents they asked friends to donate to the cause and raised over $1000. Matthew’s fundraising efforts continued this year, when he raised over $3000 for their Light a Candle Christmas Appeal. Ms Zhou said music had given Matthew a creative outlet: “When you are bored, you can always play on the piano as there is always something new to learn. He loves to perform and is thrilled to be performing at Carols by Candlelight.” MAYOH, LISA THE DAILY TELEGRAPH
BY NELSON KESSY of IPPMedia.com In a move to curb killings of people with albinism in the society, Recep Tayyip Erdogan Turkish Village (TTAF) is planning to build a Tanzania albinism village in the country next year.
The centre is expecting to have the size of about 35,000 square meters and it will be allocated along Mwai Kibaki Road. Speaking to newsmen yesterday in Dar es Salaam, Turkish Ambassador Ali Davutoglu said that people with albinism are people like others but they are being mistreated, humiliated to the extent that they feel inferior in the society. “In Tanzania the problem of albinism has become so chronic that it needs far greater efforts to control the situation. They are humiliated and mistreated as if they are not human beings while in other countries like Turkey they are treated like any other person,” the envoy noted. He expressed the view that the project will strengthen the mutual relationship between the two countries as well as its people. TTAF President Yesim Mego Davutoglo who also the wife of the ambassador said that she was influenced to establish such a project after having an opportunity to visit Shinyanga region and established how people with albinism were mistreated and exploited. “Last year I went to Shinyanga and see how these people with albinism are exploited and experience brutal killings due to superstitious beliefs,” Yesim explained. However, she noted that Tanzania Albinism Village will benefit not only people with albinism but also other disabled people. “The centre will include different people with different problems such as orphans and disabled ones and they will be attending school at the centre. They will also have an opportunity to attend vocational training after their ordinary schooling in order to be able to employ themselves and improve their living standards,” said the wife of the envoy. Furthermore, she said massive killings of people with albinism in the country is a big problem, and that’s why she decided to establish the project. “And I’m sure that through this project many people with albinism, disabled, and orphans will be the first beneficiaries of the project because they will learn different social and economic activities in the centre.” She emphasized that people with albinism are human beings like others but in Tanzania we look at them differently, with stigma and brutal killings while in developed countries like Turkey they are treated equally with assessment of all basic needs in the society. “We need to cooperate and stop killing these innocent people because it is not good killing them,” she stressed. For his part, the IPP Executive Chairman, Dr Reginald Mengi said that he was happy with the kindly decision being made by TTAF President and the envoy, noting that people with albinism didn’t choose to be born with albinism but its was fate, an act of God. “I am happy and I hope that the project will help to reduce the problem of killing people with albinism in the society,” Dr Mengi declared. He further emphasized that persons with albinism are just like other persons, they have the right to live in peace and harmony without fear of being put to prejudice, urging the entire nation to cooperate to end those problems. Meanwhile Dr Mengi has advised the Turkish government to think of pushing more investments in Tanzania especially in the renewable energy sector since it is one important sector seemingly forgotten by investors. He cited examples of good areas for such investment as including Singida and Lindi regions, saying investing in the sub-sector will be a win-win situation. On November 4, Tanzania Albino Society (TAS) secretary general Ziada Msembu said in an interview with this newspaper that people with albinism (PWA) want a law enacted for the establishment of a special fund to offer compensation to victims of attacks and their dependants. Experience has shown that victims of albino killings are left to suffer without compensation even when the perpetrators are sent to jail, which is rare enough, she had lamented. SOURCE: THE GUARDIAN A headset that talks visually impaired people around cities has been designed by Microsoft.
It works with a Windows phone and uses location and navigation data with a network of information beacons in urban locations to describe routes. The headset was tested on a journey from Reading to London, including shopping, bus and train travel. The charity Guide Dogs, which helped develop the technology, said it could help improve lives. Of the two million registered visually impaired people in the UK, 180,000 rarely or never go out, according to the charity. "People living with sight loss face a multitude of challenges every day that can prevent them from getting where they want to be in life," explained Jenny Cook, head of strategy and research at Guide Dogs. "Currently, visiting a new city is often daunting, even for people with enough confidence to tackle the challenge independently. For others, who rarely leave home alone, the thought of an unfamiliar journey leaves them stressed and anxious and visiting a new area is an impossible dream." The BBC's technology correspondent Rory Cellan-Jones tested out the headset. Before trying out Microsoft's headset I put on a blindfold, picked up a white stick and went for a short walk along London's Grand Union Canal. All the way, I was being helped by a tutor from the Guide Dogs organisation - but even so I found it an exhausting and disorientating experience. That gave me some context for when I used the experimental audio system on the trial route in Reading. At first I found it distracting rather than helpful, a clippety-clop sound echoing around my head plus a repeated ping to say I was on track. But as I hesitantly made my way down a residential street, across a road and to a bus stop, the instructions - "parked cars and overhanging trees ahead" - gave me added confidence and the 3D sound provided me with a somewhat better feel for my surroundings. For me it was all about feeling a little less scared - but for the visually impaired people who have been testing the technology for some weeks, it seemed to have increased their confidence in taking new routes up to a new level. The headset is an adapted version of one already on the market. Designed for cyclists, it sits in front of the ear so as not to drown out traffic and environmental noise. Sound is conducted through the jawbone and the headset gives a series of verbal and non-verbal descriptions. For someone who has requested a specific route, it will make a series of clicking noises to assure them they are on the right course and it will provide specific instructions such as "turn right". It also provides information about the route and points of interest. Greater freedom Beacons at bus stops and in shops beam information to the wearer Eight people with sight loss have tested the headset and five of those reported feeling safer and more confident wearing it. Kirstie Grice, one of those to trial the technology, said: "We want to live like normal people. We don't always want to plan ahead to see if we can get community transport or a taxi or something, we want to be able to just jump on a bus and go somewhere and have that freedom." The idea for the headset, which has been designed in partnership with the UK's Future Cities catapult and Guide Dogs, came from a Microsoft employee. Amos Miller is visually impaired and realised that technology might be able to help him "enjoy everyday experiences outside of the home" after his daughter was born. Some experts have questioned if the technology is capable of being rolled out widely as it is to rely on a network of beacons attached to street furniture. A Microsoft spokesman said: "A lot of the information comes from GPS and annotated maps in the cloud which provide as much, if not more than, the beacons." Source BBC News Marijuana is touted for its medical uses, lessening pain, nausea, and other uncomfortable side effects of conditions like glaucoma, nerve pain, and cancer. Nowresearchers say, a chemical found in the hotly debated drug could slow or altogether stop the progression of Alzheimer's disease.
Findings of a preclinical study published in the Journal of Alzheimer's Disease, suggest very small doses of THC, a chemical found in marijuana, slow down the production of thebeta-amyloid protein, which builds up to create plaques in the brain, an accumulation of which is a known hallmark of Alzheimer's disease. "THC is known to be a potent antioxidant with neuroprotective properties, but this is the first report that the compound directly affects Alzheimer's pathology by decreasing amyloid beta levels, inhibiting its aggregation," lead author Chuanhai Cao, of the University of South Florida's Byrd Alzheimer's Institute said in a release. Similar studies have also pointed out the effectiveness of THC in fighting the formation of harmful brain plaques. Researchers in a 2006 study conducted by theScripps Institute found that THC blocked the aggregation of plaques completely, even better than the best known inhibitors, found in existing Alzheimer's drugs. Researchers called THC "natural and relatively safe," emphasizing that in very low doses, the benefits of the compound outweigh any potential harm. But don't go light up just yet. Researchers say the findings simply suggest the compound could be explored in future development of Alzheimer's drugs and therapeutic treatments. "Are we advocating that people use illicit drugs to prevent the disease? No," said co-author Neel Nabar. "It's important to keep in mind that just because a drug may be effective doesn't mean it can be safely used by anyone. However, these findings may lead to the development of related compounds that are safe, legal, and useful in the treatment of Alzheimer's disease." Source: Huffington Post | http://www.huffingtonpost.com "We're being killed like animals," an albino woman in Tanzania sings People with albinism face prejudice and death in Tanzania. A new campaign is now being launched to end hostility towards the tiny community of about 30,000. BBC Africa's Salim Kikeke met some of them.
Mtobi Namigambo, a fisherman by trade, sits calmly on a stool outside his mud house in Ukerewe island. Once a sanctuary for albinos, this is no longer the case. His four-year-old son, May Mosi, who has albinism, sits on his lap. Showing off his newly learnt skills, May counts from one to 10, confidently. Mr Namigambo occasionally throws a glance at his wife, Sabina, who is seated on a mat at his feet preparing the family's evening meal. Their other two children are playing nearby. They also have a newborn baby, sleeping inside the house. When May was three months old, he escaped an attempted kidnap. "I had gone to the lake to fish. They were all alone in the house when the attackers struck," Mr Namigambo tells me. "My wife jumped out of the window and ran to safety with May, leaving the two children behind, who were not harmed at all." 'Hacked to death' "The attackers were after May," Mrs Namigambo chips in, "My husband was away on a fishing trip and they knew about it. That's why they came for my boys. "After jumping out of the window, they still came after me and I was screaming for help. They only backed off when I woke up the neighbours." Albino people, who lack pigment in their skin and appear pale, are killed because potions made from their body parts are believed to bring good luck and wealth. More than 70 albinos have been killed over the last three years in Tanzania, while there have been only 10 convictions for murder, campaigners say. n the most recent case, in May, a woman was hacked to death. "We're being killed like animals. Please pray for us," one albino woman sings, at an event called to promote the rights of albinos. 'Targeted for hair' May is among 70 people with albinism who live in the remote island of Ukerewe, which is three hours away from Mwanza, the second largest city in Tanzania. "We would urge the government to do more in educating the community here," Mr Namigambo tells me. "The government once held seminars about albinism. It made a lot of difference, but not any more," he adds. Campaign group Under the Same Sun, which works closely with the local albino community, says the island is not as safe as people would like to believe. The chairman of the regional Tanzania Albinism Society, Alfred Kapole, an Ukerewe native, was forced to flee to Mwanza city. "He was among the first person with albinism whose case reached the courts after a village leader attempted to kill him for his hair," says Vicky Ntetema, head of Under the Same Sun. "Last year his home was attacked. Luckily he was in Mwanza. There was another attempt on his life this year." Ms Ntetema says this is a common experience for albino people. "A family of a young girl with albinism had to flee their home twice, in 2011 and 2012, when unidentified men attacked them, saying that they were sent by the father of the home, a fisherman, to get the girls' hair. "When people commit crimes they go by canoes to neighbouring islands where they cannot be found," she adds. 'Bodies stolen' The Tanzania government has launched a campaign to raise funds to help persuade communities to abandon old beliefs and stop targeting albino people. However, the campaign focuses on urban areas, not in rural areas where albinos face the biggest threat. "We don't have the capability, or means to reach communities at village level. We mainly rely on radio or television, but we can't reach the grassroots because of costs," says Ramadhani Khalfan, chairman of the Ukerewe Albino Society. In Sengerema, some 60 km (34 miles) from Mwanza, a monument has been erected at a roundabout in the middle of the town. It is a life-size metal statue, depicting a pigmented father holding his child with albinism on his shoulders while a pigmented mother puts a wide-brimmed hat on the child's head to protect him from the sun. There are also 139 names of victims who were killed, attacked, or whose bodies were stolen from graves. A representative of the Sengerema Albino Society, Mashaka Benedict, told the BBC that even educated people still believe that albino body parts can bring wealth. "If that's the case, why are we not rich?" he asks. Mr Benedict alleges that prominent people are involved in the "killing business" and this is why very few people have been arrested, charged, convicted or jailed. "How can a poor man offer $10,000 [£6,300] for a body part? It's the businessmen and politicians who are involved." The police say they try their best to investigate attacks. "These cases are complicated because most incidents happen in very remote areas where there is no electricity, for example, and that makes identifying perpetrators at night very hard," says Mwanza police commander Valentino Mlowola. "We investigate each and every case and claim, but as you can see, it's not simple." Despite the failure to solve cases, many people living with albinism are hopeful that public attitudes will change and children like May will be able to have a life, free of persecution and violence. Source : BBC NEWS | http://www.bbc.com/news/world-africa-30394260 Struggle to protect East Africans living with albinism against culture of magic and superstition11/14/2014 abc.net.au
By Africa correspondent Martin Cuddihy Updated 6 Oct 2014, 3:50amMon 6 Oct 2014, 3:50am In East Africa, ritual magic, witchcraft and superstition play a large part in the everyday life of many people. One of the darkest elements of the cultural practice includes the lucrative trade of body parts of people with albinism who are outcast and believed to be cursed. They are killed for their body parts which are believed to posses magical properties including the cure for HIV and cancer. Some people also leave newborn babies with albinism in the bush to die. Kenya's first politician with albinism, Isaac Mwaura, is petitioning for a new law to protect people with albinism. He wants a refuge centre to cater for people who have been targeted or attacked. "It's a confluence of capitalistic greed and superstition finding expression amongst an ignorant people who are eking out a living within a cash economy," Mr Mwaura said. "But it's totally unacceptable because people with albinism are human beings like any other and they need to be respected. They need to be given opportunity like any other." School patrolled by guards to protect studentsMr Mwaura's push for protection comes as young Gabriel Kinyanjui's parents worry about his future. Gabriel's father sat up every night with a bow and arrow to protect him, and despite his best efforts, the boy has been kidnapped three times. Fortunately, he was rescued before he could be trafficked to Tanzania. Gabriel was targeted so heavily because of his rare form of the condition, known as Rufous Albinism. His hair is blonde, but his skin is still dark, albeit with a reddish tinge. A Kenyan Member of Parliament intervened and enrolled Gabriel at the Thika School for the Blind, a Salvation Army institution that caters for children with albinism, as many have problems with their sight due to a lack of iris pigment. The school's head teacher Jotham Makoha said children with albinism were vulnerable and Gabriel would be nurtured at the school. To some of our African communities they think it’s a curse – having such a child. Jotham Makoha "When he's here he will access education which he will learn very well," Mr Makoha said. "He's being attended to by people who understand what albinism is, they know how to direct him, help him, nurture him." The school has more than 20 students with albinism, and the perimeter is patrolled by armed guards every day and night. "These children with albinism are vulnerable because people don't accept people with albinism – they don't easily accept them," Mr Makoha said. "To some of our African communities they think it's a curse – having such a child. "They kill them and cut their body into pieces where they sell the small pieces for some good money - especially in our neighbouring Tanzania." Topics: witchcraft, religion-and-beliefs, community-and-society, rites-and-ritual, diseases-and-disorders, health,central-african-republic First posted 3 Oct 2014, 11:02pm It's been a busy congressional recess for Northern Virginia Rep. Gerald Connolly (D). By day he's been riding just about every form of transportation in the area -- including as a slug on I-66 -- and now, on Friday night, he will get some exposure on prime-time television.
Connolly will be on Friday's edition of ABC News' "20/20" as part of a story on the mistreatment by some East African nations of people with albinism, meaning that they lack pigment in their hair, eyes and skin. The program, according to a release from Connolly's office, focuses on "a young Tanzanian woman, Mariamu Stanford, whose arms were hacked off by villagers who sold them for profit. Rural witch doctors in the region believe the body parts of people with albinism have supernatural powers and can be mixed in potions to bring the buyer good luck." Stanford was introduced to Connolly by some constituents from his 11th congressional district -- a video of their meeting is embedded above -- and she received a free set of prosthetic limbs from the Orthotic Prosthetic Center in Fairfax. In March, the House passed a resolution authored by Connolly "[r]ecognizing the plight of people with albinism in East Africa and condemning their murder and mutilation." By Ben Pershing | August 27, 2010; 12:31 PM ET A team of scientists in Delhi has developed a smart cane for blind people, which uses sensors to give vibration feedback.
Around 12m people are living with blindness in India, the largest number for any country in the world. Priced at under $50 (£30), the hope is that the smart cane can help people in developing countries. The BBC's Shilpa Kannan met Bharti Kalra, a teacher who has been using the cane, and Professor Balakrishnan of the Indian Institute of Technology in Delhi, who is one of the developers. Source: BBC News |
Olevia james-kelleyCo-Founder and Editor of ABM |