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LepraNews Spring 2014

www.lepra.org.uk

In this issue Lepra through a lens Working with Lepra

Patron: Her Majesty The Queen

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LepraNews

Spring 2014

What Lepra means to me “I first heard of Lepra through a friend who asked if I would like to volunteer to help stuff envelopes and stick stamps for the Easter appeal. Way back then we printed, packed, stamped and posted all of our letters to supporters. A vacancy opened in the finance department in September 1979 and my work with Lepra began. Of course, many changes have taken place over the intervening 34 years. I like to think that my small part has helped us reach our 90th anniversary but our fight against disease, poverty and prejudice must continue.” - Chris Bacon, Finance manager

Inspired in India

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World TB Day 2014

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Parvati Khara, ASHA

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Working as an intern

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Lepra through a lens

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Fundraising and events

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Obituary – Francis Harris

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The De Crespigny Charitable Trust

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Are you celebrating your 90th birthday this year? Karen would love to hear from you on 01206 216700 Print and Design Colchester Print Group/Barber Jackson

Stephen Fry @stephenfry Happy Birthday to @Lepra_ HinA, the world’s first leprosy prevention organisation. Fighting #leprosy for 90 years! http://t.co/eyDYmJLERF Cocoa’s PT @CocoasPT I’m off to a primary school to do a workout with the pupils on behalf of the wonderful charity @Lepra_HinA :) Cheesy Chips @Manojiee Running Edinburgh marathon for @Lepra_HinA. Training for this is harder than the training I did for the 2 London marathons I did. :)

In this issue

We need your help

From our Twitter community

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Anna @AnnaAnsted Very pleased to return to @angmeringschool and say thank you to the Year 7s for raising £2889.70 for @Lepra_HinA Carrington Accounts @CarringtonAcc Fascinating talking to Isabel Cross at the @MaggieSempleLtd event. Setting up cooperative businesses in India changes lives.

Our front cover features Soudamini Bhoi and Laxmipriya Nayak, both 12 years old. Simon Rawles, award-winning photographer, met them when they were recovering from reconstructive surgery on their hands in Sonepur in the state of Odisha in India (see their story on page 6). You can keep up to date with Lepra by signing up for “My Lepra” at www.lepra.org.uk/join-my-lepra We update our Facebook page and Twitter tweets daily so please like and follow us! Facebook: www.facebook.com/LEPRAHealthinAction Twitter: @Lepra_HinA

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Inspired in India A few weeks ago I was lucky enough to accompany the founding chairman of Lepra in India when he visited patients affected by leprosy in our referral centre in Indore. Despite being nearly 90, Dr Desikan still uses his skills to treat the most complex cases and to pass on his knowledge to health professionals, many of whom are the age of his grandchildren. It was a privilege to witness his care and concern for each individual, taking time to understand the person as well as treat the disease. This is a legacy he has bequeathed to us, where each and every one of the 400,000 people we helped last year is known personally to at least one member of our team. Dr Desikan also made sure that our chair of trustees Ron De Witt and I were left in no doubt of the vital importance of increasing our efforts and working even harder to ensure that we reach every last person that needs our help in the years to come. We were also able to acknowledge great success. In Sanawad in Madhya Pradesh, the St Joseph’s Leprosy Centre celebrated their 1,000th reconstructive surgery with an event that brought together 125 former patients. It was uplifting to see and hear the changes to their lives: tales of employment, marriage, graduation and re-integration into family life brought about by our skilled surgeon and the loving care of all the staff at the centre. It was particularly inspiring for the group of twenty current patients just one week after their own surgery as they could begin to see the light at the end of the tunnel. Thanks to donations made in memory of a dedicated supporter of our work, Mrs Trishla Jain, I was able to announce funding to improve their female ward and communal areas, improving the experience for patients even further. All of us worry about the impact of the money we give to good causes and I have seen so much recently that gives me confidence in the longterm impact of donations made to Lepra. The European Union recently conducted follow-up reviews of a number of our past projects that they funded. They concluded that the community structures that we had established were working well and having great benefit long after we had completed our work. Recent research into the impact of our work bears this out. In addition to improving the health of the individual there is a clear positive improvement to the financial and social situations of the people we help. In our 90th birthday year we truly are able to say ‘Lepra, fighting disease, poverty and prejudice’. None of it would have been possible without your help and I know Dr Desikan would like me to remind you that together we still have so much more to do.

Sarah Nancollas Chief executive

Dr Desikan visits the sewing (rehabilitation) room at St Joseph’s

Lepra in India celebrates 25 years

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LepraNews

On World TB Day 2014 (24th March), we used our website, Facebook, Twitter and other social media to spread the word about the disease.

Spring 2014

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About seven years ago, Parvati heard that the government was looking for women health volunteers based in villages. She was excited as her matriculation qualification, equivalent to GCSE level in the UK, made her eligible for the job. After seeking consent from her husband and in-laws, Parvati applied to the district health authorities to be appointed as an Accredited Social Health Activist (ASHA, which also means “hope” in Hindi). This was a significant achievement in Parvati’s life, being a tribal woman. Parvati now looks after the health needs of women in her village including antenatal and post-natal care of expectant mothers, rushing them to the district hospital for deliveries, ensuring the immunisation of all the newborn babies and their early childhood care and development. In return, she receives incentives for carrying out each of these duties and a small travel allowance. Parvati has become the first port of call for everybody in her own village and even in surrounding areas whenever there is a health-related emergency. Parvati has been associated with Lepra since our Sahyog (TB and HIV/AIDS) project started in 2008. She was appointed as the volunteer in charge of the sputum collection centre that we had set up in her village. TB diagnostic facilities were made available for the communities living in 19 surrounding villages. Parvati provides counselling sessions in all the villages and identifies TB cases. On a weekly basis she collects sputum from these villages, travelling by bicycle. She then takes the bus to

Rayagada Microscopy Centre (26 kilometres away) to get the sputum samples tested for TB. During the five years of the Sahyog project, in addition to the training given by the government on maternal and child health, Parvati also received training on TB, HIV/AIDS and leprosy. She now makes up to Rs 1,000 (£10) every month which is a welcome contribution for her household of six family members. Her husband tills the hilly lands for rice and also grows some vegetables. Parvati’s older son Dasarath will be sitting his exams this year.

He helps his mother with all the documentation she needs to complete in order for her to claim the incentives from the government, including taking minutes of the weekly meetings she organises. Even so, the government usually delays payments to ASHAs – an issue on which we have started to lobby, to regularise health worker salaries and incentives. Every day of the week, Parvati works hard serving her community. Against this backdrop of hardship, the respect and recognition earned from her community encourages Parvati and others like her to continue the lifesaving work of an ASHA.

Parvati works hard serving her community

Parvati Khara Parvati Khara is a 34-year-old mother of two boys who lives with her husband and his parents in a remote tribal village in Rayagada district of Odisha state in India. She belongs to the Kondh tribe, one of the primitive tribal groups.

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LepraNews

“I have learnt valuable skills and I feel like I’ve made a tangible contribution to the organisation.” Rebecca Thomas

My Lepra internship experience After graduating in June 2013 with a degree in English Literature and Film, I immediately sought experience in the competitive third sector. I have spent seven months as a fundraising and advocacy research intern in Colchester. I have gained a real insight into the governance and operations of an international charity, I have learnt valuable skills and I feel like I’ve made a tangible contribution to the organisation. Working across both the fundraising and communications teams has meant that my tasks have always been varied. Most of my work has focused on researching potential corporate partnerships and developing educational resources. There have been several highlights during my time here. Representing Lepra at a corporate event in Hove, I was able to raise public awareness of our fantastic projects and build my own confidence. Composing an Early Day Motion which secured support from MPs for World Leprosy Day kicked off our 90th anniversary celebrations and gave me an insight into parliamentary lobbying. Another thing I will take away from my time at Lepra is the knowledge I have accumulated about India and Bangladesh. Both countries are now top of my travel wish list and I can’t wait to experience their astoundingly rich and varied cultures for myself. I would wholeheartedly recommend an internship with Lepra to anyone who is passionate about international development and fundraising. Now is a particularly exciting time to be involved with Lepra as we continue our 90th celebrations with lots of exciting events, raising our profile and gaining urgently needed support to fight disease, poverty and prejudice. Rebecca Thomas

Spring 2014

Lepra through a lens We’ve been really busy working with professional journalists, photographers and film-makers, putting together images and films of our work. In March, Angela Robson and Simon Rawles travelled to Odisha state in India to meet, interview and record the Lepra community. Angela, an award-winning writer and broadcaster, was so impressed by Lepra in India as “highly efficient and visionary” that she has encouraged her friends and family to support us. Simon, too, was inspired by seeing our work in some of the poorest communities and hearing about the differences made to the lives of people affected by leprosy or lymphatic filariasis (LF).

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Angela has previously worked with Simon, also an award winner as a photographer and filmmaker. Their work focuses on human rights, development and the environment. Twelveyear-olds Laxmini and Soudamini, featured on our cover and shown here with Angela, shared their story of being cured of leprosy and the reconstructive surgery which meant that they could write, eat and take a full part in their school and home lives. They bravely and proudly told their story at a special workshop at a local school, having previously hidden the diagnosis of leprosy, aware of the stigma it attracts. Our film schedule had special focus on lymphatic filariasis, sometimes known as elephantiasis. More than 120 million people are currently infected with this disease which is transmitted by mosquitoes. Angela and Simon heard from a young woman about how the disease affects her life. She had been unable to marry and have children “which, in Indian society, is like being cursed”. The incapacitating fevers and physical consequences – hugely swollen, painful legs and feet – were immense. Simon and Angela witnessed the burden on her family as she was unable to work. As Angela puts it: “Lepra cares about the people they work with. They are working with a budget which is clearly not sufficient, but people were lifted and directly helped. Lepra is one of the most impressive organisations I have ever worked with. I am highly motivated to do more to help.”

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Big Picture Charity Films, a registered charity based in Essex, work exclusively within the charity and voluntary sector to raise awareness of different causes. A big “thank you” to Maria and Nik Read who produced excellent videos from our existing images. The three videos on disease, poverty and prejudice are narrated by programmes officer, Madhavi Sakuru. Take a look at our YouTube channel “Lepra” (www.youtube.com / LEPRAHinA) to view all three – we would love your feedback to lepra@lepra.org.uk. “Big Picture Charity Films were pleased to be able to work with Lepra on this project. Madi was an absolute natural in front of the camera and perfectly conveys the message of Lepra. We wish you all the best and hope this project can raise awareness of this cause.” Nik Read

By the time you read this, you may have seen Al Jazeera’s series “Lifelines: the quest for global health”. The documentaries focus on stories of people, passion and persistence, stories of triumph. The final programme in the series on May 22nd features leprosy and includes stories of our work in India. Catch up with the programme at www.aljazeera.com/video.

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LepraNews

Spring 2014

I run in memory of my father Rex. The London marathon was just the start of 100 miles I will run this year to mark Lepra’s 90th anniversary. Tom Barton, runner in the Virgin Money London Marathon on 13th April

Gift Aid Gift Aid is a wonderful way to make your gifts to us worth even more. If you are a UK tax payer and we have a signed Gift Aid declaration in your name, your donations to us are currently worth an extra 25p for every £1 you donate. But please note, however, that the tax we reclaim on your gifts must at least equal the amount of tax that all the charities or Community Amateur Sports Clubs reclaim on your gifts for any tax year. If you are a tax payer and have not signed a Gift Aid declaration and wish to do so, or if your tax circumstances have changed and you wish to cancel your declaration to us please let us know. Contact Chris Bacon on 01206 216711.

Enjoy the great outdoors and take on a challenge Rex Barton, who died in 2006, was a long-time supporter of Lepra and travelled to India several times in the 1970s to research into leprosy at Victoria Hospital, Dichpalli. Sam Barton, (Tom’s brother) will be cycling in the exciting Prudential Ride London – Surrey 100 on Sunday 10th August. It’s a 100-mile closed road event which includes some of the Olympic route, not forgetting the challenging Box Hill climb. We wish Sam lots of luck along with all the other Lepra cyclists. We are pleased to be able to offer places in next year’s ride, so anyone interested should sign up now. We still have places for our Edinburgh to St Andrew’s cycle ride (68 miles) on 14th June. The ride takes a lovely route through the Fife hills, with well organised refreshment stops to assist you on your way. To book a place, sign up online at www.lepra.org. uk/cycle-edinburgh-st-andrews or contact Ros Kerry on 01968 682369 or RosK@lepra.org.uk Find out more at www.lepra.org.uk/challenge-yourself If you’re not sure what challenge or event you’d like to do, get in touch with Lizzie in the events team and she can point you in the right direction. Contact Lizzie on 01206 216737 or email events@lepra.org.uk. Sign up for our 2015 India bike ride and experience famous sights as well as visiting some of our projects. Find out more from Lizzie.

Take on a challenge

Our 90th anniversary cookery book is full of fabulous recipes combining mouth-watering starters, delicious mains and scrumptious desserts from our friends in the UK, India and Bangladesh. Buy copies for friends and family and delight them with new ideas from around the world. Watch out for it in our online shop in July (www.lepra.org.uk/Shop)

In October last year, houses in Walcott were evacuated during a tidal surge on the Norfolk coast. Since 2003, we have received nearly £3,000 from the community, raised at coffee mornings organised by Reverend Eiler Mellerup and supported by churches in The Coastal Group. Despite the damage and loss caused by the flooding, the latest event raised more than £350.00 for Lepra. What a fantastic effort – thank you!

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Stamps and postcards

Harry Whitehouse: walking superstar! Harry is six years old and a pupil at St John’s Church of England Primary School in Blakebrook, Kidderminster. After hearing about Lepra at school, he was really keen to help so he asked his parents if he could do a sponsored five-mile walk across the Malvern hills. On 8th March, he walked in the rain and raised an amazing £100. Congratulations Harry and a very big thank you!

Harry Whitehouse

We are always grateful to receive used stamps and postcards. These are sold at stamp fairs and other outlets to collectors from overseas and raise between £2,000 and £10,000 depending on the weight and volume. We do ask that if you are kind enough to send stamps that you ensure that the correct postage is put on the package or we are charged an underpayment fee. Please send them to Mrs Irene Allen at Lepra, 28 Middleborough, Colchester, CO1 1TG. We are of course always happy to see you at the office if you can deliver them in person.

We love to talk to companies Gayle Gover has joined us to develop our work with companies and to support and develop relationships with our existing donors.

Begin you

‘Surgery to heal my hand means I can play cricket again’

There are many ways in which we can work with companies, where each party can benefit from the relationship. Further details can be found on our website www.lepra.org.uk/ corporate We are always pleased to hear from donors who wish to get more involved or perhaps significantly support an area of our work. Gayle can be contacted at GayleG@lepra. org.uk or by telephone 01206 216733.

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90 and not out! Be part of our 90th anniversary gala dinner on 23rd July at Lord’s Cricket Ground. Rory Bremner, Britain’s sharpest impressionist, will be the star attraction. Arti Halai, TV presenter and author will compère the event. Diners will enjoy a Pimm’s reception in the Marylebone Cricket Club Museum, the world’s oldest sporting museum. Unique items will be auctioned courtesy of Sotheby’s. Sarah Nancollas, chief executive: “We chose this very special venue to recognise the first five-test series by India in England since 1959. This blacktie event gives our supporters the opportunity to transform the lives of people affected by diseases like leprosy.”

Victoria Hislop tells Semple Secrets Maggie Semple OBE runs her own fashion publishing house in London and has established a successful profile spanning broadcasting, print and digital media. In support of our 90th anniversary, she is hosting a ‘Semple Secrets’ event at The Ivy Club on Monday 23rd June 2014. Our ambassador, Victoria Hislop, will be the guest interviewee. The evening includes drinks and canapés. To book tickets contact Gayle Gover on 01206 216733 or email GayleG@lepra.org.uk

90 and

To book tickets or discuss sponsorship opportunities email 90years@lepra.org.uk or call Gayle Gover or Sarah Thompson on 01206 216700.

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LepraNews

Obituary

(Godfrey) Francis Harris, MC (1922-2014) 1977 Francis single-handedly organised a prestigious meeting at Heathrow airport at which the vital question of dapsone resistance was discussed. (Dapsone was the drug used to cure leprosy at this time).

All of us at Lepra were so sad to learn of the death in January of Francis Harris. After service in the Royal Engineers during the Second World War (when he was awarded the Military Cross), and the Colonial Service, when he worked in Nigeria and Tristan da Cunha, he joined BELRA (The British Empire Leprosy Relief Association) as we were known then, as Deputy General Secretary. BELRA became Lepra in 1964, and Francis took over as General Secretary in 1971 and later Director. Under his leadership, Lepra moved from a small charity to a highly respected international organisation, and took over country-wide responsibility for leprosy work in Malawi. For this work he was decorated by Dr. Hastings Banda in 1987 with the Order of the Lion of Malawi for ‘outstanding services to humanity’; he was immensely proud of this. During his time with us he set up a company (Help Cards) to sell Christmas cards to the trade which was very successful and he chaired the company for eleven years. We joined the International Federation of Anti-Leprosy Associations (ILEP) in 1976, and during one of their meetings in 1980, Francis had an audience with the Pope. In

When in 1981 the World Health Organization recommended multidrug therapy (MDT) as an effective treatment for leprosy, Francis directed that all those with leprosy in our flagship project – Malawi – should receive this new treatment; we were the first organisation to do this. He was also instrumental in setting up our evaluation project and the Karonga prevention trial there. He laid the groundwork for our re-entry into India after we had pulled out following its independence. In 1986 he organised the Southern African Development Co-ordination Conference in Malawi which was his last major contribution before his retirement in 1987. A man of immense integrity and diplomacy, he had considered going into politics when he left the Colonial Service, but decided that it was too corrupt for him. Instead he chose to use his great compassion for his fellow man to help change the lives of millions of people with leprosy. He said “working with Lepra provided not only an interesting life, but an opportunity of doing first class humanitarian work for some of the poorest and disregarded people in the world.” Francis was loved and respected by his staff, and all those with leprosy with whom he came into contact.

Spring 2014

In our 90th anniversary year we’re taking a look at some of our long-term supporters and asking what first inspired them, and what keeps motivating them to give to Lepra. The De Crespigny Charitable Trust has dedicated its funds for our leprosy work in India for over 15 years. Meg De Crespigny, the Trust’s founder, was inspired to help people living with the effects of leprosy in India by her experiences of visiting the country as a young woman in the 1920s. She experienced first-hand the poverty and suffering of people living with leprosy in India at that time and then dedicated the rest of her life to raising money to help the poorest of the poor. She spent a long time staying with army friends posted in India, then afterwards, living in London amidst a glamorous group of friends. However she was never fond of this lifestyle and was eventually drawn to the seclusion of the east coast of England. After the war she found her dream home in Norfolk: a tiny smuggler’s cottage on the edge of the marshes. She lived there for the rest of her life, living like a hermit so that she could save as much money as possible for charity. She would only use the daylight hours for activities, meditating during the long winter evenings to save electricity and only allowing herself a few minutes of light in the late evening for her supper. She had many friends who visited her at the cottage and she relied on them to keep her supplied in clothes and the necessities of life. She spent as little money as possible on food. It gave Meg great pleasure when, towards the end of her life, her brother suggested setting up a charitable trust with some money she had inherited. When Meg died her brother was able to add to it. The income continues to be donated to work in India with people affected by leprosy.

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donation form

Lepra is Registered in England and Wales (No. 213251) and Scotland (No. SC039715)

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• If an error is made in the payment of the Direct Debit by Lepra or your bank or building society you are entitled to a full and immediate refund of the amount paid from your bank or building society - if you receive a refund you are not entitled to, you must pay it back when Lepra asks you to. • You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confirmation may be required. Please also notify us.

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Please return this form to: FREEPOST RLUB-KCXE-ZRRY, Lepra, 28 Middleborough, Colchester CO1 1TG I confirm that I am a UK tax payer and I would like Lepra to reclaim the tax on this donation, future donations and all previous donations that I have made in the four years prior to the date of this declaration. I also confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. Signed

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“I couldn’t use my right hand before the surgery, but now I can do everything!” - Tulsi

We need your help Help us to fund the next one thousand transformations We joined Lepra in India in celebrating the 1,000th reconstructive surgery at St Joseph’s Leprosy Centre at Sanawad near Indore (India). The celebrations were particularly poignant for more than 120 people whose lives had been transformed by reconstructive surgery. One of these people is Tulsi who lives in Melkhedi, a tiny hamlet with twelve houses. Her leprosy was diagnosed when she was 14 years old and she was not able to use her right hand to work. After multi-drug treatment, a doctor at her local hospital referred her to St Joseph’s where reconstructive surgery and physiotherapy healed her hand. Tulsi’s mother Gajrabai had been cured of leprosy eight years previously.

With her parents and four brothers and sisters, Tulsi lives in a small one-room house with mud brick walls and a thatched roof. They grow vegetables and sell them at the nearby villages and also have four cattle, three goats and some hens. The family is self-sufficient in food and their income is enough for their daily needs.

Transforming surgery costs just £150 for one operation. A monthly donation of £5 could fund pre- and post-operative care for one person.

The family is looking for marriage proposals for Tulsi who is now eighteen. They have not told their community about her leprosy because the stigma attached to the disease may affect her marriage prospects. The surgery and physiotherapy have removed the obvious signs of leprosy and Tulsi has high hopes for her future. Will you help us to provide transforming reconstructive surgery for the next 1,000 people?

facebook.com/LepraHealthinAction @Lepra_HinA

Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG Tel. +44 (0) 1206 216700 Fax. +44 (0) 1206 762151 info@lepra.org.uk www.lepra.org.uk Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) Lepra is a company limited by guarantee, registered in England and Wales. Registered Number 324748

Please help others like Tulsi today by calling us on 01206 216700 or by donating on our website www.lepra.org.uk Thank you.