Saving Lives From Anal Cancer
Paulette Crowther, second from left and wearing a wig because of her chemotherapy, with her children, (from left) Camille, Tristan and Justine Almada, on New Year’s Eve 2009.Paulette Crowther’s three children were grown and she was plotting a midlife career change when a routine colonoscopy picked up cancer, but not of the colon — of the anus.
The diagnosis was a shock. Ms. Crowther, a 51-year-old mother of three from New York City, had had no symptoms and was feeling just fine. It felt like a bolt from the blue. The cancer had already spread.
But as Ms. Crowther and her children scoured the Internet for information, they couldn’t help but wonder whether the cancer could have been prevented, or caught earlier at least.
Some 80 to 90 percent of anal cancers are caused by the human papillomavirus, or HPV, the same kind of virus that causes cervical cancer. And decades earlier, when Ms. Crowther was in her 20s, she had been treated for cervical dysplasia, a condition that often precedes cervical cancer – and is also caused by an HPV infection.
If only she had known.
“We think Mom could have been saved if she’d been monitored and screened more often,” said Ms. Crowther’s oldest child, Justine Almada, 27. “Studies show that if you have cervical dysplasia, you’re at higher risk. At the very least, she should have been made aware of that.”
She added, “Anal cancer is quite treatable if it’s found early.”
The same types of human papillomavirus implicated in cervical cancer, HPV 16 and 18, are also linked to anal cancer. And in December, the Food and Drug Administration expanded the approved uses of the HPV vaccine Gardasil to include prevention of anal cancer and precancerous lesions.
Ms. Crowther — who was fiercely devoted to the brood she raised in Lower Manhattan, largely on her own after a divorce, and whom the children call their “best friend” — died last April. Within three months, Justine and her siblings, Tristan and Camille Almada, ages 25 and 23, had established the HPV and Anal Cancer Foundation.
The foundation’s aim is to raise awareness about the link between the human papillomavirus, an incredibly common sexually transmitted infection, and a whole list of cancers, each of which affects a relatively small number of people but which, taken together, affect tens of thousands. Besides anal cancer, HPV infections are linked to some gynecological cancers, like vulvar and vaginal cancers, certain penile cancers in men and certain head and neck cancers.
With a robust Web site — analcancerfoundation.org — and an expert scientific advisory board, the organization also aims to increase awareness about preventive screening, provide support to family members and caregivers and raise money for research on treatment, which remains limited for metastatic disease.
“What keeps us going is the thought that if someone had done this already, it could have prevented what happened to Mom,” said Camille, who recently stepped in to run the tax-exempt foundation.
The irony is that while Ms. Crowther was still alive, she never told anyone what kind of cancer she had. Experts say that’s not unusual for people with anal cancer, who often are ashamed of their disease. “The assumption most people make is that if you have anal cancer, you had anal sex,” Camille said. “That’s not true. Heterosexual men also have HPV in their anus, because HPV is so prevalent. But also: who cares if you had anal sex?”
Dr. Cathy Eng, an associate professor in gastrointestinal medical oncology at M.D. Anderson Cancer Center in Houston, said: “It’s really important to emphasize that the average person is in fact a female in her late 50s, early 60s — that’s the average patient.” The actress Farrah Fawcett, of “Charlie’s Angels” fame, who documented her battle with anal cancer on film, was fairly typical; she was 62 when she died of the disease in 2009. Dr. Eng added, “People associate anal cancer in general with men who have sex with men who are H.I.V.-positive; that’s not the case.”
While men who have sex with men are at elevated risk for developing anal cancer, the disease strikes more women than men: cases are diagnosed in some 2,000 men and 3,260 women each year in the United States. The disease is on the rise, with new diagnoses increasing by 2 percent a year in both men and women, according to national cancer statistics. Each year, 720 people die of anal cancer.
Other risk factors include having a history of cervical cancer or other gynecological malignancies, having a suppressed immune system, an atypical Pap smear and testing positive for HPV 16 or 18. Having had multiple sex partners, having a history of sexually transmitted disease and having had receptive anal intercourse, even without full penetration, likewise increase risk.
Early symptoms like blood in the stool or a feeling of pressure can easily be mistaken for hemorrhoids. “An important message is: if your hemorrhoids don’t get better, you need to talk to your doctor,” Dr. Eng said.
There is no clear medical consensus on screening for anal cancer. Choices include a digital rectal exam or digital anal exam, done as part of a physical or gynecological checkup, or an anal Pap smear. Dr. Joel Palefsky, an infectious disease specialist at the University of California, San Francisco, offers a screening procedure called high-resolution anoscopy, which may be an especially sensitive screening technique. But it is not widely available.
“If a woman has had cervical cancer, she is clearly at increased risk for anal cancer,” Dr. Palefsky said. “We’ve known about the connection for a while. People didn’t pay a lot of attention until recently.”
Another of the foundation’s goals is to destigmatize the disease and end the isolation many patients feel. “When you have cancer, you shouldn’t be ashamed of it; it’s terrible enough to have cancer,” Camille said
Reference Link
http://well.blogs.nytimes.com/2011/02/09/saving-lives-from-anal-cancer/
Courtesy
The New York Times Company
Kalahari bushmen's legal victory
By John Simpson
The Appeal Court judgment is a remarkable victory for the bushmen. Not only has the court upheld their right to water in the Kalahari Desert, but it has criticised the government’s treatment of the bushmen as “degrading”.
Survival International, the London-based organisation which campaigns for the rights of indigenous peoples and has strongly backed the bushmen’s legal battle, described the appeal court’s decision as “momentous”.
Ever since 1997, when the Botswanan government decided to move the bushmen off their ancestral hunting-ground in the Kalahari, the bushmen’s battle to return has been a losing one.
In 2002, the Army moved the majority of the bushmen out of the Kalahari, often brutally, but some refused to leave. Others drifted back from the soulless shanty towns where they were forced to live.
For tens of thousands of years, the bushmen have managed to live and thrive in this deeply hostile environment. The British, who were the colonial power in Botswana before its independence, promised it to them in perpetuity.
The Botswana government’s decision to move the bushmen followed the discovery of diamonds in the Central Kalahari Game Reserve (CKGR), the heart of the bushmen’s territory. It has often been alleged that the two things were linked, though successive governments have denied this.
The legal battle focused on a single well, on which those bushmen who still lived in the CKGR depended for their water. The Army blocked up the pipe with concrete and filled the basin with sand: a melancholy sight in this inhospitable desert.
Nevertheless the bushmen managed to survive without the well. They found water in their traditional ways, and sometimes they managed to raise the money to buy bottled water from a store 48km away.
On at least one occasion, as a group was returning from the 108-km walk carrying hundreds of bottles, they were stopped by guards at the Central Kalahari Game Reserve, who poured all the water on to the ground.
The 2010 judgment, which the appeal court has now reversed, was criticised inside and outside Botswana for its tone.
Presiding judge then Judge Walia said the bushmen had “brought upon themselves any discomfort they may endure”.
Botswana is in many ways a model African country — wealthy, democratic and not obviously corrupt. But even its supporters have been embarrassed by the treatment of the bushmen.
— © BBC News/Distributed by the New York Times Syndicate
Reference Link : http://www.hindu.com/2011/01/31/stories/2011013163191900.htm
Courtesy : The Hindu, BBC News
Why Norway deported its 'Norwegian of the year'
By Lars Bevanger
Oslo
Madina Salamova’s book attracted the attention of the governmentNorway has arrested and deported a young Russian woman who was crowned “Norwegian of the year” after writing a book about her life as an illegal immigrant.
Her fate prompted nationwide public protests against the asylum laws, and the centre-left coalition government has been left shaken.
Maria Amelie, 25, real name Madina Salamova, captured the hearts of many Norwegians with “Illegally Norwegian”, a book describing her fleeing the Russian republic of North Ossetia as a child and going underground with her parents when their asylum application was rejected.
Maria Amelie somehow managed to evade Norway’s immigration authorities for eight years while learning fluent Norwegian, getting a university degree and then writing her best-selling book.
“I was born in the Caucasus but I have spent more than half of my life fleeing,” she told Norwegian media when it was published last autumn.
“A large part of my life I have spent in Norway, so I feel Norwegian and my friends call me Norwegian. I feel this is where I belong.”
‘Tremendous boost’
Ms Salamova was detained when she reported in to police in OsloMaria Amelie calls herself a paperless immigrant – someone whose asylum application has been denied and consequently has no papers and no citizen rights.
Her frank book and remarkable integration into Norwegian society endeared her to the Norwegian people and media.
A weekly news magazine awarded her the title “Norwegian of the year” in 2010 but the book also blew her cover.
Many of the people demonstrating against her deportation argue that paperless immigrants should be granted the right to work, pay taxes and access Norway’s public health service while they appeal for their situation to be resolved.
Solomon from Ethiopia demonstrated in Oslo earlier this week. He says he has been a paperless immigrant in Norway for 10 years, and that Maria Amelie’s book has helped throw light on his and many others’ situations.
“It was a tremendous boost,” he says.
“She’s a voice for the voiceless – those who are living in hiding themselves and living in a very, very difficult situation.”
Maria Amelie was 12 when her parents fled North Ossetia, after her father’s business empire crumbled when he backed the losing party in the 1998 parliamentary elections.
Their lives were suddenly at risk from creditors and gangsters, they said, and it was not enough to get asylum.
Her parents are still in hiding.
Child migrant
Madina Salamova flew to MoscowMarie Amelie’s lawyer, Brynjulf Risnes, feels Norway’s immigration authorities fail in their mandate to also consider human factors.
“The obvious human factor in this case is that she came as a child, and a child should not be responsible for what her parents have done,” he told the BBC.
“Another factor is that her integration into society is obviously unique. Her opponents say we can’t treat her differently because of this but this is not the correct legal argument because the law actually does want to reward this kind of argument.”
Yet Norway’s Prime Minister, Jens Stoltenberg, has stood firm throughout this case. Speaking on national television, he said he understood why people were demonstrating.
“But my task is to make sure we execute a fair refugee and asylum policy, so we have to treat people on an equal basis, [so] that those who are in need of protection are the ones who are allowed to stay,” Mr Stoltenberg said.
His Labour Party faces a right-of-centre opposition ready to attack any sign of weakness on immigration. The government’s minority partner, the Socialist Left Party, is keen to ease immigration laws, and this has led to serious tensions within the government.
But critics say the government need not have bent any rules to allow Maria Amelie to stay.
John Peder Egenaes, head of Amnesty International Norway, said: “Norway is one of the few countries that have not at any point had any kind of regularisation of these people’s situations.
“I believe six million people have undergone so-called regularisation in Europe.
“It basically means their status as illegal is changed to legal. And this has never happened in Norway. We are just creating a paperless underclass right now.”
Maria Amelie’s supporters hope she will now be able to apply for a work permit from Russia and return as a legal Russian immigrant worker.
Meanwhile thousands of other paperless immigrants in Norway will continue their fight for more rights and what they see as a fairer hearing for their cases.
Reference Link : http://www.bbc.co.uk/news/world-europe-12309321
Courtesy : BBC News
Gujarat's astonishing rise from rubble of 2001 quake
By Emily Buchanan and Bhasker Solanki
BBC News, Kutch
Some 20,000 people died in the quake that struck Gujarat in January 2001
Ten years on from the huge earthquake that razed swathes of India’s western state of Gujarat, the BBC finds the place transformed from a pile of rubble in a neglected backwater into an economic powerhouse. How?
Kutch is a remote region in the arid borderlands of north-west India. For centuries life was brutally tough – rains often failed, there were few jobs and the enterprising would emigrate.
Then in January 2001 a magnitude seven earthquake struck, devastating a huge area, flattening cities including the district capital, Bhuj, and wrecking over 8,000 villages. Twenty thousand people were killed and more than a million others made homeless.
Those who witnessed the devastation at the time must have thought this would set back development by decades.
The Indian government was spurred into focusing on this much-ignored region in a way it had never done before.
The army was sent in to help with the emergency and $2bn of reconstruction money was allocated to the region.
Contrary to what many feared, aid and government grants were put to good use. In the first two years after the quake, nearly all the damaged villages were rebuilt.
Mithapashvaria, near Bhuj, is a small village that was completely destroyed. It was re-built with donations from the UK.
Families showed us the ruins of their old dark two-room house, and then took us to the new village.
Houses there were light and airy, with four rooms, running water and a toilet.
The village also had a medical centre, a temple and communal areas it hadn’t enjoyed before.
Navin Prasad, of Sewa International, a non-governmental organisation, said that in village after village the reconstruction had produced a leap forward in development.
“We have taken people out of the Middle Ages and into the modern world,” he said.
This progress was repeated all over Kutch, and it is most noticeable in Bhuj.
After the earthquake it was a sea of rubble.
Radical plans
Shocked and traumatised, residents fled, with many living in temporary accommodation for months.
It took several years to implement plans for a completely new city.
Houses had to be destroyed to make way for wider roads.
Ten years on Bhuj has been reborn.
It has two new ring-roads, an airport, parks and thriving shops.
Pradeep Sharma was the government official widely credited at the time with pushing through the radical plans.
“What you see is a new Bhuj,” he says. “We have widened the roads, laid down water supply systems and underground drainage systems.”
The BBC’s Emily Buchanan explains how this street in Bhuj was cleverly widened after the quake
The success of the reconstruction effort could never have been sustained without economic recovery.
This was triggered by the Indian government creating new tax-free zones, which sparked a boom in private investment.
It is thought $10bn has come into the region, with £7bn more to come.
Business boom
Some 300 companies have established their businesses in Kutch and many more are queuing up to follow suit.
Mundra is a microcosm of the scale of development.
It was a small fishing port in the middle of a salt marsh before the earthquake.
Now it’s an industrial hub, handling hundreds of tonnes of goods every day.
Once a tiny fishing outpost, Mundra’s port is expected soon to be bigger than the one at MumbaiThe Adani group which owns the port is now worth $7bn.
They’ve also bought a coal mine in Australia and container ships to bring the coal back to India to feed the country’s biggest power station.
Mundra is expected soon to be bigger than the port at Mumbai.
They are drawing on the ample supply of land and cheap labour.
In nearby villages, the only work used to be in traditional crafts.
Now there are thousands of new jobs and Adani is taking over the work of aid agencies.
Sushma Oza is a former aid worker who now heads the Adani Foundation.
Jobs revolution
“Our own budget for social development in this region is $6m a year, so you can imagine how we are trying to change the lives of people to live in better way,” she says.
Gujurat is now home to a gleaming new power station, India’s biggestNear Anjar, a city that was devastated by the earthquake, the biggest towel factory in the world was set up by Welspun in just nine months.
Its vast mechanised looms weave 250,000 towels a day.
It has taken over the British company, Christy’s, the official towel-maker of the Wimbledon Lawn Tennis Championship.
The chairman of Welspun, Balkrishan Goenka, says good local governance was key in choosing Kutch.
“There were no local taxes for the first five years and no excise duties. Nor were there indirect taxes to government – they were exempted for five years,” he says.
“Those were the primary benefits. More than that there was huge support from the local government so industry can come faster.”
Beside the towel factory, the jaws of the Welspun steel plant’s furnace spit out great slabs of metal.
Since the earthquake, over 110,000 new jobs have been created in Kutch, and there are thought to be hundred of thousands more on the way.
With two years of good rainfall and with the 400-km (250-mile) water pipeline from the Narmada River, the population is now increasing as the job opportunities increase.
The region is now a cornerstone of the Indian economy, a fact almost unthinkable 10 years ago.
Reference Link : http://www.bbc.co.uk/news/world-south-asia-12309791
Courtesy : BBC News
Two Indian NGOs receive grant from Japan
By The Hindu Staff Reporter
| Under the Grant Assistance for Grassroots Project |
In recognition:Japanese Consul General Kazuo Minagawa hands over the grant contract to CREED Secretary Viswalingam Nadanasabapathy in Chennai on Tuesday. Kasthurba Gandhi Kanya Gurukulam managing trustee Appakutti Vedarathinam (left) is in the picture.
CHENNAI: Two non-governmental organisations on Tuesday received grant from the Japanese government for their projects under the Grant Assistance for Grassroots Project (GGP). Japanese Consul General in Chennai Kazuo Minagawa signed the grant contract here with the representatives of the NGOs.
Vocational training for women
The Centre for Rural Education and Economic Development (CREED) received Rs.45.36 lakh for its project to construct a training centre in Cuddalore to provide vocational training for rural women. A grant of Rs.37.79 lakh was given to Kasthurba Gandhi Kanya Gurukulam to construct a printing school for underprivileged girls and women in Nagapattinam. Mr.Minagawa, who gave away the cheques, said that the new building for CREED would help the NGO provide training in tailoring and computer science. About 2,500 women are expected to benefit from the grant.
Similarly, the grant to Kasthurba Gandhi Kanya Gurukulam would be used to train 100 women every year and provide them employment.
Funded projects
Nearly 100 projects have been funded under GGP in the southern States to improve the socio-economic situation in the rural areas since 1989.
This fiscal, four projects, including those provided in October 2010, have been funded, Mr.Minagawa said.
Target group
CREED’s secretary Viswalingam Nadanasabapathy said that the organisation has been working for the betterment of the underprivileged people for over two decades. CREED’s target group is mainly landless agricultural labourers who get seasonal income.
Appakutti Vedarathinam, managing trustee of Kasthurba Gandhi Kanya Gurukulam said that the grant would help reach out to more underprivileged women. The organisation has been striving for the welfare of rural women since 1950.
Reference Link : http://www.hindu.com/2011/01/27/stories/2011012752340300.htm
Courtesy : The Hindu
Mathematics simplified in beads
By Karthik Madhavan
Coimbatore, India.
| Abacus can help visually challenged master the subject |
Use of abacus has helped in bringing
mathematics in to focus
‘ICEVI is ready to provide training in abacus
to anybody who is interested’
— Photo: S. Siva Saravanan
Maths made easy: Abacus can be used to solve multiple problems.
COIMBATORE: Conquering numbers is no joke. The numerophobics will vouch for it. And so will the visually challenged.
Be it learning addition, subtraction or any other basic operation, the visually challenged have always found the going tough. For, mathematics is not a subject that can be memorised and written.
It is not true, counters M.N.G. Mani, Secretary General, International Council for Education of People with Visual Impairment (ICEVI). The visually challenged can easily learn and master the subject by making use of abacus and Taylor Frame.
“Abacus is an excellent tool to learn mathematics because it helps in more ways than one,” says Mr. Mani, who has not only taught mathematics but also authored a book on how to teach the subject to visually challenged students.
“Abacus is tactile in nature, contributes to the development of mental arithmetic, increases speed, has a reference point, to which one can return in case of error in solving a problem and can be used to solve multiple problems.”
He says the use of the abacus has helped in bringing mathematics in to focus, for, for long teachers neglected the subject.
Special education
“Until integrated education was introduced in the 1980s in schools, special education teachers were not taking mathematics and abacus seriously because they, perhaps, believed that the subject cannot be taught to the students,” Mr. Mani says.
R. Srinivasan, a visually challenged retired professor of English, recalls that he was not taught abacus during his school days.
One of the reasons for teachers feeling so was that they had not mastered abacus and did not know how to teach mathematics using abacus, Mr. Mani says.
To solve the problem the Rehabilitation Council of India amended the special education teacher training syllabus.
It introduced abacus in the syllabus and ensured that those who passed out with a special education certificate had the knowledge to use abacus.
Today, special education courses have at least 12 hours dedicated to methodology of teaching mathematics to visually challenged students.
Once the teachers learnt to use abacus they were able to impart the skill to the students, says Mr. Mani.
“It is good that the teachers to-be are learning abacus but they should not learn it in theory but in practice as a skill development programme.”
Enquiries with special education teachers, however, reveal that it is not taken seriously and that only a few institutes are keen on teaching the use of abacus to the teachers to-be.
Mr. Mani says the ICEVI is ready to provide training in abacus to anybody who is interested.
Reference Link : http://www.hindu.com/2011/01/20/stories/2011012051020200.htm
Courtesy : The Hindu
Italian wine a life-saver in fight against HIV/Aids
By Duncan Kennedy
BBC News, Tuscany
The natural treasures of Italy are being harnessed to help pay for anti-retroviral drugs for people with HIV/Aids in Africa
“Your very good health” is a popular toast often exchanged between people pinging two glasses of wine together.
Usually it is a gesture that is meant to be more friendly than literal.
But now in Italy, its meaning may, indeed, be taken at face value.
That is not because of the contents of the glass, but because of the bottle.
Italy’s quality wine producers are selling some of their finest vintages with special labels on the bottle to help in the fight against HIV/Aids in Africa.
On the grapevine
The tiny red labels have been put on around two million bottles so far, each bearing the words ‘Wine For Life’.
For every bottle sold, 50 cents (42p) goes to buy anti-retroviral drugs for people in Africa.
“This is about life, it is not about business”, says Luca Sanjust, the owner of the Petrolo winery in Tuscany and one of the producers signed up to the scheme.
Luca led me through the idyllic rolling hills of his vineyards to his production line.
There, workers were putting the red labels on bottles of his delicious Galatrona.
“Wine to us is sacred. Life is sacred, ” Luca says.
“It’s about taking the love that we receive from nature, in the form of wine, and giving it back to the earth, in the form of helping our needy brothers and sisters in Africa.”
This almost spiritual reasoning for supporting the project is shared by many of the 120 wine producers who are now a part of the ‘Wine For Life’ programme.
Luca happens to be a good friend of Jamie Oliver, the British chef who regularly visits Luca’s villa to try out new recipes and buy his olive oil there.
120 wine producers are now part of the scheme in ItalyHis is a medium-sized winery, with the vineyards producing about 70,000 bottles of wine a year.
So, with each bottle making 50 cents, Luca is able to contribute around 35,000 euros (£29,500) a year to the scheme.
African dream
The ‘Wine for Life’ idea did not come from the wine makers, but from the Sant’Egidio Community in Rome.
Founded by students in 1968, Sant’Egidio has grown into a unique mix of Christian charity, social communicator and diplomatic facilitator.
In its long history, it has done everything from providing Christmas lunches for the homeless, to acting as mediator in the Mozambique civil war, leading to the Rome Peace Accord of 1992.
Mario Marrazitti, its ebullient leader, was part of that peace process and is also behind ‘Wine For Life’.
“We were doing work in ten African countries in what we call our ‘Dream’ project and we needed to sustain it, financially”, he tells me amid the tropical plants of Sant’Egidio’s glorious garden in Rome.
“We thought that wine producers were a natural partner in this private/ public arrangement, as they represent a connection with nature, whilst also having the ability to raise money.
I ask Mario if the project has worked.
“It’s been incredible,” he says.
“We believe that about 20,000 children and 2,000 adults have been saved by getting access to the drugs paid for by the wine scheme”.
Natural treasures
The charity behind the wine project believes 20,000 children have been saved as a resultMario now wants to expand it, by getting supermarket chains like Tesco and Carrefour to set up special corners in their stores, where customers can buy a wider range of products with the red labels on.
“Everyone wins,” says Mario.
“The supermarkets will attract a select, socially-conscious, clientele, the producers costs are all covered and the people of Africa get access to the drugs they need, but which governments and other non-governmental organisations can’t always provide,” he says.
In Tuscany and other areas of Italy, soil, weather and care blend to produce some of the world’s finest wines.
Now, those natural treasures are being harnessed for people in a continent hundreds of miles away.
For Luca Sanjust, the link between his land and their life has become sacrosanct, a mission that goes beyond commercialism.
He knows that customers all over Italy are now helping uncork a different kind of revenue stream to fight HIV/Aids and where one of the pleasures of life is now helping to save it.
Reference Link : http://www.bbc.co.uk/news/world-europe-12130780
Courtesy : BBC News
Social media for social change: Stanford professor uses Facebook, Twitter and personal stories to promote bone marrow donations
Samir Pendse’s cousin, Sonali Patwardhan, left, and aunt, Amrita Lokre, register Vaibhav Lole at a bone marrow donor drive held recently at a Hindu temple in Fremont. Lole was one of 62 people who became potential donors at the event to help Pendse, who has leukemia. (Photo by Adam Gorlick)
Using online social networks to register more Indians as bone marrow donors has become both a Good Samaritan cause for Jennifer Aaker and part of her curriculum. She’s spearheading a campaign relying on social media to get 100,000 more people signed up with the national bone marrow donor registry. And she’s working with students from Stanford’s Haas Center for Public Service to help them organize around a specific cause that has deep meaning to them.
Samir Pendse was diagnosed with leukemia in 2003.
BY ADAM GORLICK
One email is all it took for Chaitali Nadig to try saving a life.
The message advertised an upcoming bone marrow drive to benefit Samir Pendse, an 18-year-old battling relapsed leukemia. A marrow transplant is one of his best hopes for a cure.
“Due to the stage of his disease, he has a very short time window,” the email stressed. “Hence the need is URGENT.”
The email – sent by the Fremont Hindu Temple to its members – included a picture of Samir. He’s smiling.
“I had to come here today,” Nadig said outside the temple this past Sunday. She had just rubbed a few cotton swabs along the inside of her check to produce a DNA sample that will show whether she’s a potential bone marrow donor for Samir or someone else needing a transplant.
“Looking at this kid’s face in the email and seeing how brave he is made me want to do something,” she said. “And doing this cheek swab has almost no effect on my life, but it could save someone else’s.”
Marrow matches are almost always made among people of the same ethnic origin. And with only about 140,000 South Asians in the national bone marrow donor registry, Samir – who was born in Fremont a decade after his parents moved to California from India – learned quickly that a match would be hard to find.
Sunday’s drive drew 62 people affiliated with the temple. Hardly any of them knew Samir or his relatives. But many said they read the same email that Nadig received or saw a related Facebook site maintained by Samir’s family. And that was enough of a nudge to get them to show up.
Professor Jennifer Aaker is spearheading One Hundred Thousand Cheeks, a campaign relying on social media to get 100,000 more people signed up for the national bone marrow donor registry.
“When you learn about something from your friends or people you trust through email or Facebook, it’s much more persuasive than a message coming from a corporation or someone you don’t know,” said Jennifer Aaker, a marketing professor at Stanford’s Graduate School of Business who is helping attract attention to Samir’s search for a donor.
“When a request comes from an area of deep personal meaning by someone you trust, you are more likely to take action,” she said.
Social media for social change
The idea that online social media can inspire people to take small, individual steps that snowball into significant social change is at the heart of Aaker’s work at Stanford.
And using those tools to register more Indians as marrow donors has become both a Good Samaritan cause for Aaker and part of her curriculum. She’s spearheading One Hundred Thousand Cheeks, a campaign relying on social media to get 100,000 more people signed up with the national bone marrow donor registry through cheek swab drives like the one held at the Fremont temple.
Aaker is working with students from Stanford’s Haas Center for Public Service to help them organize around a specific cause that has deep meaning to them – and in the process tell the story of people like Samir and Sanjana Sahni, a mother of twins living in Sunnyvale, Calif., who needs a marrow transplant to combat her multiple myeloma.
“Our hope is to harness research on social persuasion, happiness and emotional contagion to create infectious action,” Aaker said.
She was recently in India – where she’s pushing for the creation of a country-wide bone marrow registry – to give several presentations about her work with online social networking. She coupled those talks with three marrow registration drives that helped enlist more than 300 potential donors. Aaker holds similar events at Stanford and Bay Area companies.
“I used to think social networking was a waste of time,” Aaker said. “I thought the more time you spend on Facebook and Twitter, the more narcissistic and self-involved you become. But it became clear that social media can be used to amplify altruism and create social good in the world.”
Chaitali Nadig registers as a potential bone marrow donor by swabbing her cheek to produce a DNA sample at the Fremont event.
Lessons from a student
That realization came a few years ago after Robert Chatwani, one of Aaker’s students at the time, told her about Sameer Bhatia. Bhatia, a friend of Chatwani’s who received his bachelor’s degree from Stanford in 1997, was diagnosed with leukemia in 2007.
Facing a 1-in-20,000 chance of finding a donor to match his Indian DNA, Bhatia and his friends devised a strategy using emails, Facebook and YouTube to spread the word urging South Asians to register as marrow donors. Their online campaign became viral. Within 11 weeks, they managed to log 24,611 South Asians in the national bone marrow registry.
Bhatia found his match and received a marrow transplant. Although he died a few months later, his story inspired Aaker to teach a class on how to harness social technology to create social good. Her teaching and research blossomed into The Dragonfly Effect, a recently published book that highlights Bhatia’s story and other cases where social media were used to focus attention on a cause and rally large numbers of people to take action.
And her work has attracted those who are in most need of her help.
Close calls and another hope
Samir Pendse’s parents contacted Aaker and plugged into her social network in November, shortly after doctors told them the 18-year-old’s leukemia had returned.
Samir was first diagnosed in 2003, a shock followed by three years of chemotherapy treatments that often kept him out of school and off the playground.
“It was a very hard treatment,” said his aunt Amrita Lokre. “And it made it even harder to see all of his friends outside playing and doing everything he wanted to do but couldn’t.”
The chemo battered his cancer into remission. And in the summer of 2007, Samir and his family celebrated with a trip to visit relatives in India.
But good health didn’t last very long. Shortly after returning home, the leukemia – and the treatments – were part of his life once again. But his family also learned that a bone marrow transplant offered hope for a cure, and they started organizing marrow drives throughout the Bay Area.
They advertised the events among the local Indian community using email and talking to as many people as they could.
“It was an uphill battle,” said Samir’s cousin Chetan Patwardhan.
He figures the family’s efforts paid off by getting about 2,000 people signed into the bone marrow registry. And early on, a match for Samir was found. But the potential donor backed out.
“There’s a misunderstanding of what it takes to donate marrow,” Lokre said. “People think it will hurt or maybe make them sick. But that isn’t true, and they just don’t realize that.” During the procedure, marrow is drawn from the pelvic bones with a needle and syringe. Most donors are released from the hospital hours later.
By early 2010, Samir’s leukemia went into remission once again.
Now the cancer is back. And this time, chemotherapy won’t work. Samir is scheduled to receive a cord blood transplant – a promising alternative to a marrow transplant – just before the new year.
Once again, he came close to having a marrow transplant. A potential donor who registered during one of the drives Aaker helped organize in Mumbai was an almost perfect match for Samir. But timing and logistics scuttled that chance.
Still, the hope was found – half a world away, but within reach in a growing network of people realizing their small steps could create a big change in someone’s life.
Reference Link
http://news.stanford.edu/news/2010/december/aaker-marrow-registry-121610.html
Courtesy
Stanford University
UMass Amherst Scientist Helps Design System Using RFID Devices to Guide Blind Visitors inside Unfamiliar Buildings
AMHERST, Mass. –
An electronic system developed by Aura Ganz, professor of electrical and computer engineering at the University of Massachusetts Amherst, allows visually impaired people to safely navigate unfamiliar buildings using a three-ounce electronic device and a Bluetooth headphone.
The system, called PERCEPT, uses Radio Frequency Identification (RFID) tags placed throughout a building as audio landmarks. When a visually impaired person tunes into these electronic signposts with an RFID reading device, the system provides verbal instructions through the headphones. Ganz heads a research team working on the project through a three-year, $380,000 grant from the National Institutes of Health/National Eye Institute.
Unfamiliar buildings pose a huge challenge for blind and visually-impaired people. Current training programs to help them, including at UMass Amherst, require memorizing a large amount of information for many buildings each semester, and this can lead to confusing and frustrating situations.
Ganz is trying to deal directly with the problems associated with vision impaired people and their ability to get around. She has a pilot project in the works. “We do have a basic prototype of the PERCEPT system already built,” Ganz says. “It will be installed by June of 2011 in the Knowles Engineering Building on the UMass campus, where human testing will begin this summer.”
At any entrance of Knowles, the visually impaired person will be able to get directions to every room in the building at a kiosk where the PERCEPT system will orient them with audio instructions. The kiosk has an outline of the building layout represented using raised and Braille alphabet. Using the kiosk, you enter a desired floor, room number or another destination, such as a restroom or elevator, to get simple directions spoken into the headset. As the user follows those directions, the hand-held PERCEPT device can scan the RFID tags that serve as signposts along the way, and further directions are relayed to the headset.
The project has been conducted with suggestions from Carole Wilson, the certified orientation and mobility specialist from the Massachusetts Commission for the Blind, located in Springfield. She is also helping Ganz by recruiting 20 visually impaired subjects from around western Massachusetts to test the PERCEPT system in the Knowles building. These are people unfamiliar with the UMass Amherst campus.
It’s important that the test subjects have no prior knowledge of the building layout, Ganz says. “This system was created to be deployed in any building, and it’s geared toward visually impaired visitors who have never been there before. PERCEPT should work for visually impaired people entering any building for the first time. Our goal is to produce this technology for public buildings everywhere.”
Other members of the PERCEPT research team are Russ Tessier, professor of electrical and computer engineering, who is developing the miniaturized hardware for the RFID reading device, and Elaine Puleo, research associate professor from the School of Public Health and Health Sciences, who is working on the experimental design.
Reference Link
http://www.umass.edu/newsoffice/newsreleases/articles/117625.php
Courtesy
University of Massachusetts Amherst
The Healers of 9/11
This weekend, a Jewish woman who lost her husband in the 9/11 attacks is planning to speak at a mosque in Boston. She will be trying to recruit members of the mosque to join her battle against poverty and illiteracy in Afghanistan.
Susan Retik
The woman, Susan Retik, has pursued perhaps the most unexpected and inspiring American response to the 9/11 attacks. This anniversary of Sept. 11 feels a little ugly to me, with some planning to remember the day with hatred and a Koran-burning — and that makes her work all the more exhilarating.
In the shattering aftermath of Sept. 11, 2001, Ms. Retik bonded with another woman, Patti Quigley, whose husband had also died in the attack. They lived near each other, and both were pregnant with babies who would never see their fathers.
Devastated themselves, they realized that there were more than half a million widows in Afghanistan — and then, with war, there would be even more. Ms. Retik and Ms. Quigley also saw that Afghan widows could be a stabilizing force in that country.
So at a time when the American government reacted to the horror of 9/11 mostly with missiles and bombs, detentions and waterboardings, Ms. Retik and Ms. Quigley turned to education and poverty-alleviation projects — in the very country that had incubated a plot that had pulverized their lives.
The organization they started, Beyond the 11th, has now assisted more than 1,000 Afghan widows in starting tiny businesses. It’s an effort both to help some of the world’s neediest people and to fight back at the distrust, hatred and unemployment that sustain the Taliban.
“More jobs mean less violence,” Ms. Retik noted. “It would be naïve to think that we can change the country, but change has to start somewhere. If we can provide a skill for a woman so that she can provide for her family going forward, then that’s one person or five people who will have a roof over their head, food in their bellies and a chance for education.”
In times of fear and darkness, we tend to suppress the better angels of our nature. Instead, these women unleashed theirs.
Paul Barker, who for many years ran CARE’s operations in Afghanistan, believes America would have accomplished more there if our government had shared the two women’s passion for education and development. “I can only wonder at what a different world it could be today if in those fateful months after 9/11 our nation’s leadership had been guided more by a people-to-people vision of building both metaphorical and physical bridges,” Mr. Barker said.
A terrific documentary, “Beyond Belief,” follows Ms. Retik and Ms. Quigley as they raise funds for Afghan widows and finally travel to Afghanistan to visit the women they had been helping. Ms. Quigley has since stepped down from Beyond the 11th because she felt in danger of becoming a perpetual 9/11 poster widow, but she still is working on a series of Afghan initiatives. Ms. Retik, who has since remarried, remains focused on the charity.
Beyond the 11th began by buying small chicken flocks for widows so that they could sell eggs. Another major project was to build a women’s center in the city of Bamian, where the women weave carpets for export. The center, overseen by an aid group called Arzu, also offers literacy classes and operates a bakery as a business.
Another initiative has been to train Afghan women, through a group called Business Council for Peace, to run a soccer ball manufacturing company. The bosses have been coached in quality control, inventory management and other skills, and they have recruited unemployed widows to stitch the balls — which are beginning to be exported under the brand Dosti.
Ms. Retik’s next step will be to sponsor a microfinance program through CARE. There are also plans to train attendants to help reduce deaths in childbirth.
Will all of this turn Afghanistan into a peaceful country? Of course not. Education and employment are not panaceas. But the record suggests that schools and economic initiatives do tend over time to chip away at fundamentalism — and they’re also cheap.
All the work that Beyond the 11th has done in Afghanistan over nine years has cost less than keeping a single American soldier in Afghanistan for eight months.
I admire Ms. Retik’s work partly because she offers an antidote to the pusillanimous anti-Islamic hysteria that clouds this anniversary of 9/11. Ms. Retik offers an alternative vision by reaching out to a mosque and working with Muslims so that in the future there will be fewer widows either here or there.
Her work is an invigorating struggle to unite all faiths against those common enemies of humanity, ignorance and poverty — reflecting the moral and mental toughness that truly can chip away at terrorism.
Patti Quigley, Beth Murphy, Susan Retik
Reference Link
http://www.nytimes.com/2010/09/09/opinion/09kristof.html?_r=1&th&emc=th
Courtesy
The New York Times Company
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