Albinism

[Ms. Kathy]

Article published Apr 27, 2007
Africa's golden voice
Source Link: The Daily Advertiser - www.theadvertiser.com - Lafayette, LA www.acadiananow.com/apps/pbcs.dll/article?AID=/20070427/ENTERTAINMENT/70426041/1040
Herman Fuselier
[e-mail]
One person in 17,000 in the United States has albinism, according to a national support group. The condition describes people with little or no pigment in their eyes, skin or hair.
Some may have eye and skin sensitivity problems. But in parts of Africa, where albinos are considered bad luck, a person with the condition can face extreme prejudice and superstition.

Albino babies have been abandoned at birth or slaughtered in ritual sacrifice. Some Africans claim they grow ill in their presence.

In his native Mali, Salif Keita, who has albinism, went to college to become a teacher in the late 1960s. But a day before he was set to graduate, Keita was told he would not receive a diploma.

“They said the children would be too afraid of me because of my skin color,” Keita said in an interview with The Wall Street Journal.

“But at the same time, they were happy to hire real whites as teachers.”

Few are afraid of Keita today as he reigns as one of the world’s most renown singers. Keita and his legendary afro-pop sound close Festival International at 6:15 p.m. Sunday.

Known as “Africa’s Golden Voice,” Keita is regarded as one of the world’s most influential artists. In January, 2003, PopMatters said of Keita’s Moffou CD, “No music more lovely was released last year.”

BBC Radio named Keita’s M’Bemba disc as its 2006 Album of the Year. Reviewer Ian Anderson said the CD was “among the best records he’s ever made.”

Born in 1949, Keita can trace his ancestry back to Soundjata Keita, who founded Mali in 1240. Yet his albinism made him anything but revered in early life.
Keita caused further unrest in the 1960s when he became a musician, a position considered beneath a member of Mali’s Royal Family.

After he was expelled from school, Keita formed a trio that performed in the streets and clubs of Mali’s capitol city, Bamako. In the 1970s, Keita and music mate Kante Manfila from the Rail Band formed Les Ambassadeurs, a group that gained huge followings throughout Mali and surrounding nations.

In 1978, the president of Guinea named Keita Minister for Music and Culture, based on his enormous popularity.

Keita began his solo career in the 1980s with recordings that included his classic Soro album, which fused traditional Malian music with modern technology.

The album combined Keita’s influences of African, jazz, funk, Europop and R&B.
The Amen album of 1991, which included appearances by Carlos Santana, Wayne Shorter and Joe Zawinul, established Keita as the first African band leader to win a Grammy nomination.

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Update: See some videos here:
mskathyskids.blogspot.com/2009/06/salif-keita.html

[Ms. Kathy]

Disability doesn't deter Shelton High School student
Source Link: Huntington Herald www.zwire.com/site/news.cfm?BRD=1346&dept_id=434928&newsid=18295942&PAG=461&rfi=9

By KATE RAMUNNI, Editor May 03, 2007

Anyone who knows Shelton High School student Heather Walton wouldn't be surprised to see her taking part in Elizabeth Shelton School's Diversity Day.

The 16-year-old spent Friday showing the younger students what life is like for people who are vision im-paired. And Heather should know - she is legally blind due to albinism, a lack of melanin in the eyes, skin and hair.
But that hasn't stopped the sophomore from excelling, whether in the classroom or with the girl's track team, where she serves as video-grapher.
The honor student was recently accepted into the National Honor Society. She wants to be an educator and has already begun checking out the accommodations at Southern Connecticut State University, where she hopes to pursue a teaching degree after graduation.
"Most of my teachers say I am a good advocate," she said. But she also has a good support system, she said.
"My family has been very supportive of everything I have done," she said.
On Friday Heather was demonstrating the equip-ment that helps her excel in the classroom, including a variety of magnifiers, talking calculators, a closed-circuit television that magnifies her work and the large print textbooks she uses for classes.
The geometry textbook her classmates use takes up eight large-text volumes, she said.
"I don't use Braille," she said, instead preferring to magnify regular texts.
Heather attended both Elizabeth Shelton and Shelton Intermediate schools before attending the high school.
"She really was an ambassador for people with disabilities, particularly her own," said former Elizabeth Shelton School Principal Ste-phen Fusti, who retired two years ago.
"I wasn't surprised to see that at Diversity Day she took on a leadership role," he said. "I see great things for her in the future, especially promoting awareness and support for people with dis-abilities."
It was early in her aca-demic career that Heather began to make herself known, Fusti said.
"In the third or fourth grade she began talking to the other kids [about her dis-ability] in the classrooms," he said.
When the other children began to question her about her differences, she decided to promote awareness, her father John Walton said.
"She really is out in front with it," he said. "We are very proud of her."
She shares a family trait of determination, he said, which she has used to her benefit in terms of succeed-ing.
"It can lead to good things as well as bad," he said, "but she is very much so using it for good."
When Heather was in fourth grade, she came to school counselor Pam Anderson, upset that other children were making fun of her disability.
"She was clearly upset," said Anderson, who now works at Sunnyside School.
"I asked her to explain the facts about her condition, and she did a really good job," Anderson said. Because of that, she encouraged Heather to educate her peers about her situation, Ander-son said.
Together the two put together a program on albinism that Heather pre-sented to the school.
"It was her show and she did a fabulous job," Ander-son said, "and she was not teased at all after that."
In her talk, Heather explained why she has to do things like put lotion on when she goes outside and has to wear hats and sun-glasses, Anderson said.
"The children's attention was right there on her," Anderson said. "It was just great - a special moment for everyone, children and staff."
An alternate way to stay involved with sports
Because of a blood-clotting problem that goes along with albinism, Heather is not able to participate in physical ac-tivities.
"I can't really do contact sports," she said. "I can't see the ball, so I might get hit with it," which could lead to further clotting problems.
But that didn't stop her from finding a way to get involved in high school sports. She is now serving as a manager of the school's track team and films the matches.
"I asked if there was anything I could do," she said. "I am really happy to be involved with it.
"I have had a lot of diffi-culties thrown at me but I have made the best of it," she said. "It helps to be outgoing and to meet new people."
"For a kid to go out and spread the word, my hat is off to her," Fusti said. "She has the ability to make peo-ple aware that life is not al-ways easy but not to let that stop you.
"She is quite a young lady," he said.





©Huntington Herald 2007

[Ms. Kathy]

Jazz musician and composer Aaron Choulai

Aaron Choulai in conversation with Richard Fidler

Jazz musician and composer Aaron Choulai
Last Update: Monday, July 16, 2007. 4:36pm AEST

By Luise Hoffmann

Aaron Choulai is a human melting pot of cultures - he was born in Papua New Guinea to his Chinese/Motu mother and his Jewish/Polish/Australian father. His talent as a jazz musician has taken him around the world - he now lives in New York - but his latest project has returned him to his roots.

The 24-year-old is in Brisbane for the Queensland Music Festival, which is featuring his show 'We don't dance for no reason'. For the performance, Aaron has brought with him a choir from his ancestral village, Tatana.

"The whole choir's here, the whole band's here, it's a multimedia kind of performance," Aaron says. "People that will come will get an insight into Motuan culture, and into a lot of the social problems in Papua New Guinea. First and foremost, though, you're going to hear incredible singing that's never been documented and never really been explored at all."

'We don't dance for no reason' is ai na asi a mavaru kavamu in Motu. "Literally that means, 'we don't do silly dances'," explains Aaron. "It comes from a side of my family that moved out of Tatana... and these people are song keepers of a traditional dance called 'reroipe', which you do when someone dies, to signify the end of a mourning period.

"And this is what they say: 'We don't dance for no reason. You want us to dance? You want us to dance reroipe, you have to have a reason'."

Aaron grew up in Port Moresby, but moved to Australia in his early teens, party because of his health. Aaron is albino and legally blind. "I have to be very careful with the sun, obviously, which is one of the things that comes with albinism," he says.

He spent much more time away from the sun than any of his Papua New Guinean contemporaries, but that had its benefits. "I spent a lot of time indoors, which is how I started playing the piano," Aaron points out.

He started playing the piano comparatively late, at the age of 14. He met his mentor, Paul Grabowsky, soon after. "I met Paul through my aunt, and I just said, 'Hi, my name's Aaron, blah blah blah'," he remembers.

"Then I auditioned for the Victorian College of the Arts, and Paul heard that I got in playing piano (I'd only been playing piano for about two months at this stage) and Paul offered to teach me, which is something that I now know that he's never done before. He rarely takes students on so I was very, very lucky.

"I had no idea who he was so I was like, 'Cool, a piano teacher. Great'," he laughs.

Aaron completed his jazz training in Melbourne and New York. He was signed to New York's prestigious Sunnyside Records at the age of 21 and has already recorded three albums for the label.

It's going home that sustains him, though. He travels back to Papua New Guinea three times a year. "The energy and the space I need to be creative... going back home for me to Papua New Guinea is a renewal of energy. For me, PNG is really home, and I have no choice about whether I can go back or I can ever live there again, so that's hounded me a lot and my mother, you know, moving because of me. I wouldn't say it's guilt, but I needed to involve myself as a musician and as an adult now."

Working with the Tatana Village Choir gave Aaron a chance to reconnect with his Papua New Guinean heritage. "I've moved so far away from it, living in New York, playing jazz music," he reflects. "What I do professionally has nothing to do with who I feel I am culturally, so I felt like I had to keep putting on these different hats. This is the first time I've been able to combine the two."

Bringing his different worlds together in this project has also equipped Aaron with a stronger sense of self. "The one this thing project's taught me is how to just be myself and be OK with that in any environment."

Aaron is performing with the VADA jazz ensemble and the 16-voice Tatana Village Choir at the Queensland Music Festival on Wednesday 18 and Thursday 19 July.

Related Images at these links:

• Aaron Choulai rehearses with the Tatana Village Choir www.abc.net.au/reslib/200707/r160295_586132.jpg
  
• Tatana village - the ancestral home of Aaron Choulai www.abc.net.au/reslib/200707/r160292_586116.jpg
  
• Aaron Choulai as a baby, with his Papua New Guinean family
  www.abc.net.au/reslib/200707/r160293_586130.jpg
  
• The Tatana Village Choir at home www.abc.net.au/reslib/200707/r160296_586136.jpg
  
• A slower pace of life at Tatana Village www.abc.net.au/reslib/200707/r160297_586139.jpg
  

Related Audio at this link: www.abc.net.au/news/img/audioicon.gif

[Ms. Kathy]

Compiled by the Government Communication and Information System
Source Link: Bua News Online:(South Africa) www.buanews.gov.za/view.php?ID=08022114451005&coll=buanew08
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Date: 21 Feb 2008
Title: Defend the human rights of Albinos---------------------------------------------------------------
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By Gabi Khumalo

Pretoria - Pupils at the Lehlabile Secondary School in Mamelodi have been challenged to be ambassadors and defenders of people with Albinism.

"I call on you to be advocates, to fight for and defend the human rights of people with Albinism," said Dr Sibulelo Amos who is the National Child Women Health and Nutrition Cluster Manager.

Speaking at the annual National Schools Essay Competition on Albinism, Dr Amos called on pupils to engage with other young people and the community at large to promote awareness on Albinism and ensure that stereotypes disappear once and for all.

He warned that stereotypes surrounding the Albinism condition continued to create serious challenges for society when it comes to managing Albinism.

The essay competition is an annual project which started in 2002, aimed at improving the research and writing skills of Albino pupils.

Importantly, the competition for Grade 10 to 12 pupils, also promotes awareness around and dispels myths and misconceptions about the condition.

The topics of the essay include Being Different in my Community, Experience of a Teenager with Albinism, How to Relate to People with Albinism and Albinism - A Disorder or Not.

Speaking on behalf of the minister who was unable to attend the unveiling, Dr Amos said the idea behind the essay was to communicate a simple yet powerful message that Albinism, like many other conditions affecting people, can be managed.

He said people who do not have the condition must start viewing Albinos as people.

If we are able to accept people who are racially different from us, surely we should be able to respect and accept the uniqueness of people with Albinism, he said.

Dr Amos encouraged people with Albinism to take measures to protect themselves and minimise the risks of being susceptible to skin diseases and problems associated with sight.

Due to lack of melanin, the skin of the person with Albinism burns easily in the sun and are therefore at a high risk of skin cancer.

Albinism is the colouring condition in which a person is unable to produce melanin, a colour pigment of the skin, hair and eyes.

It is estimated that one in 4 000 people has Albinism in South Africa, compared to one in 20 000 worldwide. - BuaNews

[Ms. Kathy]

Single protein behind united colours of skin palette
Source Link: Thaindian News www.thaindian.com/newsportal/world-news/single-protein-behind-united-colours-of-skin-palette_10020292.html
February 23rd, 2008 - 11:36 am ICT by admin - Email This Post

New York, Feb 23 (IANS) From ivory white to chocolate brown, the range of skin colours you see in the world could be the handiwork of a single protein, according to a new study. Corporate researchers, taking forward a 2005 study that said a gene called SLC24A5 decided skin colour, have zeroed in on NCKX5 - the protein product of this gene - as the key factor determining whether you are black, white or brown.

Findings of the study have been published in the latest issue of the Journal of Biological Chemistry.

In the study, when the researchers removed NCKX5 from melanocytes - the skin cells that manufacture the melanin pigment that determines skin colour - melanin production decreased dramatically.

The researchers believe NCKX5 plays a direct role in decisions that influence the assembly of melanosomes, the specialized cell vesicles where melanin is produced.

They conclude that alterations, which increase or decrease NCKX5 effectiveness, could influence total skin pigment production.

Though humans generally possess similar concentrations of melanocytes, there are subtle differences that determine melanin production and hence greater or lesser concentration of skin melanin.

Some have little or no melanin in their bodies - a condition known as albinism.

[Ms. Kathy]

Safeguards against witch doctors sought by Tanzanian albinos

By Os Davis on April 22, 2008 04:56 AM

Source Link: www.miamipoetryreview.com/2008/04/safeguards_against_witch_docto.html

Human-rights hero of the year? Relatively early into 2008, Tanzanian president Jakaya Kikwete has got to be considered an early favorite for his courageous moves in helping the plight of his country's albino population against local witch doctors.

No, really. Kikwete devoted time in his monthly televised address to the nation to addressing the apparently epidemic-level murder rate of the albino population in Tanzania. Said Kikwete: "I am told that people kill albinos and chop their body parts, including fingers, believing they can get rich when mining or fishing. This is senseless cruelty. It must stop forthwith."

Over the past twelve months, some 19 albinos have been murdered and at least two have disappeared without trace. Police estimate that another 20 or so may have been killed in unreported incidents. Cases of exhuming the recently buried bodies of children in order to remove extremities for use in witch doctors' rituals have also been recorded.

About one week later, Kikwete appointed Al-Shaymaa Kwegyr to Parliament as one of the body's 323 sitting members. Kwegyr is the first ever albino to become a parliamentarian in Tanzania, and represents part of the effort "to protect albinos from being targeted by witch-doctors."

An estimated 270,000 of Tanzania's 39 million citizens have albinism. In his address, Kikwete ordered all albinos to register themselves so as to "improve their safety."

[Ms. Kathy]

Albinos victims of human sacrifices
Beliefs surrounding albinos remain in Africa
Source Link: Afrik.com en.afrik.com/article13487.html
Water-Genies, fortune tellers, half-men half-gods, those are some of the attributes associated with albinos in some countries in Africa. Sought after for their good or evil powers, they are often killed as human sacrifices. To put an end to these beliefs and the obscure practices that follow it, associations fight daily for the rights of the albinos. Report.

Tuesday 6 May 2008, by Stephanie Plasse

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In Africa many people are affected by albinism characterized by the lack of pigmentation. In addition to sight problems and cancer risks that come with the condition, albinos are subject to persistent beliefs in Africa. In spite of educational campaigns, human sacrifices still occur on the continent. It is not that unusual to find the murder of an albino in the columns of an African newspaper.

The persistence of human sacrifices

Ambivalence and ambiguity of a white child born by two black parents fuel occult beliefs and practices. In most cases the mother is held responsible for the sickness. « She is accused of having slept outside in a forbidden place or of being unfaithful to her husband. » explained Fabéré Sanon, president of the Burkina Faso based association for albinos (ANIPA) to Afrik.com. Albinos are often believed to have evil or good powers. « They have supernatural strength, can predict the future or have spells to bring sorrow or wealth. » continues Mr. Sanon. In best cases people offer gifts to the albinos. « People used to follow me to offer me gifts hoping it would bring them good luck, I always refused » recalls Korotomi Traoré, a young Burkinabe who arrived in France 4 years ago and part of the French association for albinos called Genespoir .

Unfortunately, many albinos are wanted for human sacrifices, promising enrichment or social elevation. « During elections, albinos are the targets of candidates. We have to stay home during these periods. » recounts Fédéré Sanon. « Albinos are no longer perceived as men but as sacrificial lambs wanted for their heads or their genitals, considered as the body’s strongest parts » he adds.

It is socially that the repercussions are most felt and most common. Even if it happens less and less often some albinos are still rejected at birth. « When I was born my father did not want to keep me, fortunately my family convinced him, believing that I was a blessing. » explains Anguy Bajikila president of the Albions sans frontières (ASF) association. Often perceived as threats many live in reclusion. « I have almost never set foot out of my home out of fear that people may harm me. » declares the Burkinabé Korotimi Traoré. Beliefs are tough for the albinos. Even in France they are still sometimes rejected. « Africans look at me strangely, they avoid me. They are scared of me. » confides Ms. Traoré. « I left Burkina Faso to escape these beliefs but they have followed me all the way to France. »

« Superstitions tend to disappear in Africa because people are less ignorant and are now considering albinism as a disease. » explains Fabéré Sabon, from ANIPA. He added « Associations have very little economic support although the continent is one of the worst concerning the disease. » Thanks to education campaigns, the albinos are constantly less perceived as different creatures.

A new hope for the sick who now want the government to help with the effects of the disease.

[Ms. Kathy]

Albino girl killed for body parts
A six-year-old albino girl in Burundi has been found dead with her head and limbs removed, in the latest killing linked to ritual medicine.

Albinos in the region have been targeted because of a belief peddled by witchdoctors that their body parts can be used for magic potions.

The girl, who was attacked on Sunday, was the sixth person with albinism to be killed in Burundi since September.

There have also been a number of attacks in neighbouring Tanzania.

The latest attack took place in Burundi's eastern province of Ruyigi.

The BBC's Prime Ndikumagenge in Burundi said the child and her family had only just returned to their family home.

Armed attackers broke into the family home and tied up the girl's parents before shooting her in the head, local officials say.

They had been among a group of about 50 people with albinism to have fled to a provincial centre because they feared for her safety.

The head of the Burundi Albinos' Association, Kasim Kazungu, says people with albinism had not suffered any discrimination until other Burundians heard about the lucrative trade in albino body parts in neighbouring Tanzania.

Last week, police in south-western Tanzania arrested a man who was attempting to sell his albino wife to Congolese traders.

Two mothers in western Tanzania were also attacked with machetes after gangs failed to find their albino children.

Story from BBC NEWS:
news.bbc.co.uk/go/pr/fr/-/2/hi/africa/7733597.stm

[Ms. Kathy]

[This is a subject that is very sad and dear to my heart. I post them here to make people aware of the discrimination and horrifying things that happen to people with albinism on the African continent so that hopefully we can work together to put a stop to these practices. ~K]

Ultraviolets, ultraviolence: double threat for Tanzania's albinos
Source Link: www.google.com/hostednews/afp/article/ALeqM5glT0lv7Dyc8fXlbLz9Go-HUhRtaQ

MWANZA, Tanzania (AFP) — When he walks down a street in northern Tanzania, Alfred Kapole knows that his legs, arms, skin, tongue and hair are worth thousands of dollars to local witch doctors.

As an albino, he used to have to hide from the sun but now he is also being hunted as an ingredient for "lucky potions" to make people rich, a macabre trade for which more than 40 albinos have been slaughtered over the past year.

"Once we were walking down the street, with the albino society's secretary and treasurer, heading to the hospital for a check-up and some builders started yelling 'Deal! Deal!'" said Kapole.

The chairman of the Tanzania Albino Society in the Mwanza region said the men were arrested but a court later let them off, arguing that it could not be established whether they were guilty of abuse.

"There is too much impunity, this is why we live in fear," said the 46-year-old, his pale green irises flickering laterally behind Ray Charles sunglasses and a black felt fedora covering his hay-coloured hair.

Like many albinos in the East African country, he had to quit his job for fear of being kidnapped, murdered and dismembered.

According to local residents, witch doctors use albino organs and bones in concoctions to divine for diamonds in the soil, while fishermen have been known to weave albino hair into their nets hoping for a big catch on Lake Victoria.

In February 2008, five-year-old Mariam Emmanuel was slaughtered in her bedroom, the youngest victim of a string of murders which has left 43 albinos dead in a year, not counting the newborns killed by their own parents.

Her 12-year-old sister Mindi, a diminutive girl with normal black skin pigmentation, was sleeping in the same room.

"In the middle of the night, three men came with a torch. They told me to shut up or I would suffer the same fate as my sister."

She recounted the story crouched against her mother's lap in front of the family homestead of mud huts, fumbling her filthy turquoise dress, her eyes turned earthbound, as if transfixed on a film on that fateful night.

"I peeped from under the blanket. They grabbed her then one of them pulled out a big knife. One of them slit her throat while the other was holding her down, she was struggling, her legs were like running in the air."

"They collected her blood in a tin, drank it and then cut both her legs off under the knee and clipped out her tongue. They put it all in a bag and ran away," she said.

Her 76-year-old grandfather Mabula was supposed to look after the children but slept right through the butchery.

He buried her inside one of the huts and has since slept over her grave every night, in a gesture of mourning but also to keep away robbers who have been digging up graves across the country to find albino bones.

According to Under The Same Sun, a Canada-based NGO, there are at least 170,000 people with albinism in Tanzania, a country of 38 million inhabitants.

Albinism is a congenital lack of the melamin pigment in the skin, eyes and hair which protects from the sun's ultraviolets, making albinos vulnerable to medical complications.

They are shunned and subject to social discrimination in many parts of Africa, and murders of albinos have also been reported in Burundi.

In Tanzania, some have sought shelter in hospitals in the capital Dar es Salaam but many remain exposed in rural villages.

A few miles from the lakeside city of Mwanza, Mitindo primary school for the blind has become a rare sanctuary for albino children.

Mariam's nine-year-old brother, kicking a makeshift football around the yard, is one of dozens of children enjoying the education and relative safety provided by the school.

"We have 68 children at the moment but numbers are increasing every day, we were not ready for this," said head teacher John Loudomya.

"We have put up a fence and the government is trying to improve security by stepping up night patrols," he said, adding that the school needed supplies of sun lotion for the albinos as well as footballs containing bells for the blind.

The authorities of the east African country have come out strongly against the attacks but the killings have continued and distrust among the victims is growing.

No one embodies this quandary quite like Shaymaa Kwegyr, who is both an albino woman and a member of parliament, appointed last year by the president.

"Who are these people who buy an albino hand for millions of shillings (thousands of dollars)? I don't understand. They are certainly not afraid of government," she told AFP by phone.

[Ms. Kathy]

02/21/2009
Dealing With Albinism
Source Link: KELOLAND.COM www.keloland.com/News/NewsDetail6371.cfm?Id=0,80924

A little boy from Wall Lake was born with a genetic condition in which left him without any pigment in his skin.
You may be familiar with the term "albino," but Dylan Uehling's mom is trying to erase the stigma.

Imagine being a 4-year-old and not being able to spend time outside without sunglasses, a hat, sunscreen that has to be applied constantly and your clothes have to be washed in a special detergent that puts sunscreen in your clothes. It's not an easy routine to get used to, but it's how Dylan can protect himself from the sun's harsh rays.

"He's very white, white hair, white skin, white eyelashes. He has no pigment, the only color he has is the blue in his eyes," Dylan's mom Samantha Rinder said.

Dylan has what's called albinism. It's a genetic condition in which his skin carries no melanin, meaning he will never tan. He also has poor vision that's associated with his condition that requires him to wear glasses to see anything. While his condition requires some extra work, Samantha says he just like everyone else.

"All characters portrayed by an albino are evil, in the movies and the cartoons and they are not evil, my little boy is a typical rambunctious 4-year-old boy," Rinder said.

Albinism is rare. It affects 1 in 17,000 boys and 1 in 20,000 girls and that's why Samantha is hoping the bowling event she's organizing on Sunday will help Dylan find some new friends and meet others with his condition.

"It's not something that's bad, it's not something that's evil, they are normal people," Rinder said.

While Dillion and his friends spend the afternoon hitting the lanes, the funds raised will go to NOAH, the National Organization of Albinism and Hypopigmentation that helps provide education and funding for families to travel to conferences and meet others with albinism.

So while Dillion's condition may be rare Samantha hopes this weekend, others will look at her son as no different, just a 4-year-old with plenty of energy.

You can help Dylan and the NOAH program this weekend. The Bowl-A-Thon starts at 4:00 PM on Sunday at the Ten Pin Alley in Hartford. You can bowl, get shoes, pizza and soda for $6.50 along with prizes and a raffle.

[Ms. Kathy]

Albinism, vitiligo aren’t same condition
By Dr. Mitchell Hecht
Source Link: Atlanta News, Sports, Atlanta Weather, Business News | ajc.com www.ajc.com/services/content/health/stories/2009/02/18/doctor_Hecht_albinism.html
For The Atlanta Journal-Constitution

Wednesday, February 18, 2009

Q: What causes a person to be born albino? I have a friend who has patches of vitiligo. Are the two conditions related?

A: Albinism is a condition that one is born with and not acquired. The word “albinism” comes from the Latin word meaning “white.” There are six types of albino disorders, each caused by a genetic defect at one of six different genes.

Whereas albinism is an inherited genetic condition, vitiligo is an auto-immune disorder where for reasons that are unclear the body begins attacking patches of melanin-producing cells to cause irregular areas of skin without skin pigment. There is contrast between normal pigmented skin and de-pigmented skin.

In albinism, the absence of skin pigment is uniform and total.

[Ms. Kathy]

No stopping this go-getter DJ
11 March 2009
Elijar Mushiana
Source Link: Sowetan - Entertainment www.sowetan.co.za/Entertainment/Article.aspx?id=956124

Veteran DJ Rapson Mbilu Rambuwani refuses to let the stigma of albinism prevent him from achieving his dream.

Rambuwani, 46, of Unit C in Thohoyandou, Limpopo is a deejay at the University of Venda Community Radio Station. Unlike some who are not comfortable with their albinism condition, this man walks tall and calls himself “a white man”.

He hosts a programme on disability on Sundays, Tuesdays and Wednesdays, and is putting the station on the map.

“My programmes help disabled people to be independent. I also help them with tenders, to get wheelchairs, to get into the industry and to get low-cost houses. ”

Rambuwani has a lot on his plate. The DJ is also a gospel musician, president of Albinism Forum Limpopo, chairperson of Limpopo Disabled Forum and public relations officer of the Limpopo Music Forum.

He is a true role model and regularly visits disabled people and anyone else who needs help.

“Since the 90s, I have established many disabled forums and branches. I also raised funds from local donors and bought sun block for people to protect themselves from the sun.”

He also helps disabled people get recording deals.

“I help them to understand the industry. I teach them how to market their music and help them with contacts. I also educate people who continue to hide their disabled family members.”

[Ms. Kathy]

Defending albinos' rights to life

Source: International Federation of Red Cross And Red Crescent Societies (IFRC)

Date: 08 Jun 2009


By Andrei Engstrand-Neacsu in Nairobi

Superstition has led to the killing of more than 60 albinos in Burundi and Tanzania. The Red Cross Red Crescent is backing government efforts to protect them, and defends their right to a life in dignity.

As the trial of 11 Burundians accused of involvement in the killing of albinos and the selling of their body parts continues in Ruyigi, the Red Cross Red Crescent has made the protection of the most vulnerable and promotion of respect for humanitarian values like non-discrimination and respect for diversity its highest priority.

More than 60 lives were lost in a recent spate of albino killings in Eastern Africa.

"The killings of albinos must stop and their dignity restored," says Anseleme Katyunguruza, Secretary General of the Burundi Red Cross, which is providing humanitarian aid to 48 albino children and adults sheltered by authorities in the township of Ruyigi.

At least 12 albinos have been murdered in Burundi and 50 in Tanzania during the past few months. Although some 200 people were arrested last year on suspicion of murder in Tanzania, none have been convicted. In Burundi last November, however, two men were jailed for life for killing albinos.

Greed, superstition and murder

Katyunguruza talks about a "phenomenon of albino hunting" that started in August last year. The demand came from neighbouring Tanzania and is closely linked to the economic boom in the fishing and gold mining industries along the shores of the Lake Victoria.

This has turned into a deadly business, with killers reportedly being paid between 200 and 5,000 US dollars for their crime."In search for profit, witch doctors revived an old superstition that the limbs and genitals of an albino can bring quicker and better results to one's enterprise. We are condemning and fighting this horrible form of discrimination," he adds.

Red Cross volunteers have been helping the bereaved families with the burials of the mutilated bodies of family members. Things are so serious that volunteers often have to pour concrete over the tombs to prevent albino corpses from being exhumed at night by people in search of the 'magical organs'.

Family betrayal

Many volunteers have taken the risk of sheltering in their own houses people with albinism, some of whom have even been threatened by members of their own families. Red Cross volunteers are driven by a firm commitment to respect human dignity and protect people from suffering and violence. The Red Cross strongly believes that all humans are equal and are not to be discriminated on the basis of criteria such as race, gender or living with albinism.

"We are two albinos in our family - my younger brother and I. One day our older brother came back from Tanzania with strangers. At nightfall, they hovered around our house as they watched us. Then they caught my brother and killed him," one albino child, on the verge of tears, told a Burundi Red Cross volunteer.

His dead brother's body parts were then sold off for 300,000 Burundian francs (about 250 US dollars). "We alerted the police, even though we were threatened. The authorities arrested [our older brother] but, for some reason, he was released shortly after. Now he is in hiding in Tanzania," he added.

The areas worst affected are the communes of Bweru, Nyabitsinda, Kinyinya, Gisuru, Butaganzwa around the town of Ruyigi, not far from the Tanzanian border. The killings occur regularly in Tanzania as well. The body parts are at high demand among miners and fisherman around the Lake Victoria regions of Mwanza, Shinyanga, Kigoma and Mara.

Red Cross protection and assistance

Authorities in both countries have offered protection to dozens of albinos in shelters safeguarded constantly by the police. In Ruyigi, there is tight security at the shelters where the Red Cross is distributing food, digging latrines and providing other essential services.

"We have collected money and take turns to visit our (albino) fellow Burundians. We bring beer and share it with them since this is sign of acceptance and solidarity," says one volunteer, adding that the Red Cross also encourages communities to help vulnerable albinos returning home by reconstructing houses and labouring their fields.

Activities encouraging respect for humanitarian principles and values have intensified in communities across the affected areas. Further assistance includes advocacy with local authorities in order to sensitize them to the plight of the albino. Schools have also been approached to ensure that albino children can continue their studies in the town of Ruyigi and the town's hospital has been asked to allow free of charge medical care for albino people in need.

Across the border, the Kabanga public school for the disabled, near the town of Kigoma, on the shores of Lake Tanganyika, provides refuge for some 50 Tanzanian albino children youngsters and single mothers.

Many have just escaped their villages with their lives and tell harrowing stories of killing and mutilation.

One small boy talks about his non-albino mother's hand was severed by albino hunters armed with machetes after she tried to prevent them seizing him.

The school has now completely run out of space, but vulnerable albinos are still being brought in by the police from as far as 200 kilometres away.

The Tanzanian Red Cross has been able to provide sunblock cream as well as blankets, mosquito nets, soap and mattresses left over from its programme to assist Burundian and Congolese refugees in camps nearby, including personal contributions from volunteers.

Changing minds, saving lives

While eagerly waiting to hear about the outcome of the Ruyigi trial, some displaced people with albinism are already thinking of returning to their villages. When the time is right, Red Cross volunteers will accompany them every step of the way and ensure that additional discussions aimed at stemming discrimination are being organized.

A series of training sessions focusing on the reintegration of albinos into their communities has already taken place and volunteers have tested not only the acceptance but also the readiness of communities to protect those who decide to return.

"The results were satisfactory but communities remain divided over the issue," says Evariste Nhimirimana of the Burundi Red Cross. "We need to continue our work … we cannot expect that superstitions will be easily eradicated."

The Red Cross plans to use cultural gatherings to explain to the most suspicious that there is nothing supernatural about albinism; that in fact it is a health condition that cannot entirely be treated. Focusing on dropping bias, critical thinking and non-violent communication will be key to influence behavioural change in the community.

Nshimirimana's concerns are echoed by his Tanzanian colleague Julius Kejo, who says: "We need to change minds in order to save lives."

Case study: Claiming back dignity

In Tanzania's Pwani village, one man with albinism is making history. Driven by a passion to help disabled people in his society, Hamis Ngomella took on special education training in a college and graduated as a teacher of children with special needs. He is among the few in his village to make it to college.

Hamis is the chairman of the albino association and represents the Red Cross in a regional disaster management committee.

The 40-year-old is one of the 170,000 people living with albinism in Tanzania. But Hamis refuses to live in fear. The second born in a family of three, he is the only albino, and feels lucky to be accepted and loved by his parents and siblings.

"When I was born, my mother tells me that the traditional midwife made a grimace when she saw me. No one welcomed the arrival of a strange baby. But my mother protected and kept me," he says.

Hamis faced constant discrimination throughout his childhood: society didn't accept him and schoolmates called him names like "Mzungu" which means "white man" in Swahili. Some people even suspected his mother of having slept with white people, as if this was a shame.

"Disability is simply our own invention - the hardship, things difficult to understand. Is a socio-political issue rather than a matter of health," Hamis told his colleague Stella Marialle.

"We need to claim back our dignity," he says.
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Source Link: www.reliefweb.int/rw/dbc.nsf/doc100?OpenForm

[Ms. Kathy]

Yet another article concerning the atrocities committed against those with albinism in African countries:
mskathyskids.blogspot.com/2009/06/defending-albinos-rights-to-life.html