LEPRAnews From exclusion to inclusion
In this issue: Two generations at a crossroads Building futures
January 2012 www.leprahealthinaction.org
LEPRAnews
In this issue
Welcome Welcome to the first edition of LEPRA News for 2012. In this issue we focus on leprosy-related discrimination found in local communities, colonies and in law. As we hand over our Brazil projects to our Dutch partners, we remember young Adriana, whose plight was shared with millions on the children’s programme Blue Peter 16 years ago. Adriana didn’t get treatment in time and her friends rejected her. Like those residing in leprosy colonies in India, she was made an outcast. You may remember buying an ‘Adriana’ Rose in support. Finally, we examine the ways that leprosy-related stigma can be reduced which includes campaigning both overseas and in the UK, for the rights of those affected; education programmes and self-help groups. I hope you enjoy all the articles, and look forward to your feedback. Joanna Belfield Editor, LEPRA News
Editor Joanna Belfield Contributors Sarah Nancollas – Chief Executive Joanna Belfield – Editor LEPRA News Irene Allen – Asst Editor Leprosy Review Catherine Cherry – Programmes Officer Duane Hinders – Country Representative (NLR) Madhavi Sakuru – Programmes Officer Nicolette Dawson – Communications Reg Charity no. 213251 Paul Chinnock – Volunteer (UK) Charity registered in Lizzie Dearling – Events Fundraiser Scotland no. SC039715 Karen Page – Events Fundraiser Ros Kerry – Community Fundraising Community Fundraising Team Photography LEPRA’s employees Peter Caton Colchester Gazette Design and Print The Print Connection, 01473 810230
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January 2012
LEPRA Health in Action 28 Middleborough Colchester, CO1 1TG 01206 216700 www.leprahealthinaction.org
Message from the CE
3
Cover Story
4
Witnessing the positive impact of our leprosy activities in Bangladesh
News and notes
6
Work in Brazil continues after handover
Inside the colony
8
Two generations at a crossroads in Shantinagar
Campaigning News
10
Fighting leprosy discrimination in the UK and India
Fundraising News
13
Fundraising News
14
How you’ve helped
16
Dates for your Diary 2012-13 Paris Marathon 2012 15th April
Great Swims (1 mile) Various dates and locations
London Marathon 2012 22nd April
One day Trekathons Various dates and locations
Edinburgh Marathon 2012 27th May
India Bike Ride January 2013
BUPA London 10K 2012 27th May
Supporters’ Trips January 2013
Great North Run 2012 16th September
For more information about these fundraising events, please email events@leprahealthinaction.org or telephone 01206 216799. More details are also available on our website.
Virgin Active London Triathlon 22nd and 23rd September
messagefromtheCE
Untreated leprosy caused the eventual collapse of Vithabai’s nose
Survey reveals high prevalence of leprosy across India by Sarah Nancollas
How can you know what services to provide for leprosy-affected people if you do not know how many people are involved? A judge faced this dilemma when we helped one of our partner organisations in India, Society for Leprosy Affected Persons or SLAP for short, raise a Right to Information request with the Government of India regarding health care provision for people with leprosy. As a result of this, a much needed national leprosy sample survey was conducted in India in 2011 to find out the true scale of the issue. Our teams in the field have long suspected that leprosy is more prevalent than has been reported and this proved to be the case. Across the whole country, nearly 50 per cent more cases were found than had been expected, and in many states it was three times higher than reported. For LEPRA Health in Action, it showed that we are working in some of the worst affected states and that there is still a major need for our work. Although the survey painted a bleak picture, there was a ray of hope for the future. In the State of Odisha (formerly Orissa), with a population nearly
1.5 times that of the UK, LEPRA coordinates the international leprosy organisations and acts as advisor to the government. We have a network of leprosy referral centres and work closely with health care providers to train and educate people about leprosy diagnosis and treatment. We also provide good quality health education at community level and work hard to reduce the stigma attached to leprosy so that people feel able to come forward for treatment. Odisha was one of the very few states in the survey where the actual level of cases found was below that expected. In addition, the level of disability caused by leprosy was significantly lower than the national average, showing that people are being diagnosed early and cured. In a recent national meeting in India, the leprosy approach in Odisha was declared a model of best practice and the government called for it to be rolled out across India. It is your support that has allowed us to carry out this vital work as major donors are not prepared to make funds available for leprosy. The results of the Indian survey have shown us that the task is even bigger than we thought, and we ask for your continued support to help us transform the lives of people affected by leprosy.
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COVERstory
A training session for the self-help group
From exclusion to inclusion in Bangladesh by Catherine Cherry
As a Programmes Officer, new to LEPRA Health in Action, I recently visited our programmes in Bangladesh and witnessed the positive impact of our leprosy work first-hand. What struck me straight away was that ten per cent of people there who are newly diagnosed with leprosy already have some form of permanent visible disability: irreversible nerve damage in their hands and feet, disabling injuries due to loss of sensation, clawed fingers and toes and/or eye damage. Even with treatment, the damage caused is usually irreversible. For many, curing leprosy is just a beginning. If the disease is left untreated, people can end up with serious deformities that continue getting worse. To address this, LEPRA Bangladesh works tirelessly to tackle the barriers preventing people being diagnosed early. I visited a film show in a small village in Sirajgonj – one of many that take place across north-east Bangladesh. I watched as
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the whole village enjoyed an evening combining popular cinema with information on leprosy; a method of reaching people of all ages with health information. This is one of many strategies we use. As well as theatre, community meetings and school visits to raise awareness of leprosy, we teach people to recognise the early signs and symptoms and where to access treatment. Fear of rejection and discrimination by their communities is another barrier to people coming forward for diagnosis. I visited self-help groups in Bogra district which were started as part of LEPRA’s Exclusion to Inclusion project. This is an area where numbers of leprosy cases are well above the national average. Group members told me that they are not only met with discrimination from their communities, but also experience self-stigma due to losing confidence in themselves and believing that they are a burden to their family and community. This negatively affects their opportunities to earn a living. Our project combats this stigma and makes people with leprosy feel part of their
COVERstory communities by empowering them with skills to take up employment, start businesses and become economically productive. It was inspiring to meet some of these people motivated to make changes in their communities; to change attitudes by strong will and create opportunities to contribute and become valued. They were learning skills to care for themselves and were striving for independence. It was clear, however, that much remains to be done. LEPRA’s self-care clinics such as the one attended by Tahomina (pictured below), provide essential care for people disabled by leprosy, yet this group is only successful because the government doctor who runs the clinic recognises the importance of leprosy work and is supportive of LEPRA’s efforts. Sadly this is not the story elsewhere. However, in November 2011, a law preventing people affected by leprosy from leprosy treatment in mainstream hospitals was repealed. Until that change, people with leprosy were banned from entering hospitals. Reconstructive surgery can have a dramatic impact on someone’s life, but there are just Tahomina was ten years old when she began to lose sensation in her hands and feet. Her father took her to a doctor who diagnosed leprosy and prescribed multi-drug therapy. Unfortunately, she had already sustained permanent nerve damage. This caused her to develop painful wounds and ulcers. Over the years, without access to care, Tahomina’s disabilities worsened. She lost all her toes and her hands became severely deformed. Nerve damage to her eyelids meant she began to lose the ability to blink. Today, Tahomina is 35 years old and has a two year old son called Tawfik. It is hard to imagine how difficult it is washing, dressing, feeding and holding him with missing fingers, but somehow she manages to care for him.
two reconstructive surgeons in the whole of Bangladesh (one of whom works for LEPRA), severely limiting the number of people who can benefit from surgery. With your support, we aim to expand our programme in Bangladesh, to help more people affected by leprosy and to find and treat people with the disease at the earliest stages, before they become irreversibly disabled. We would like to train more surgeons so that more people affected by leprosy can benefit from restored function of leprosy disfigured hands and feet. Your invaluable support will help us to achieve these goals. n The
number of new cases with established disabilities at the time of detection has reached ten per cent in Bangladesh
n There
are tens of thousands of people in Bangladesh living with permanent leprosy disabilities
n There
are just two surgeons in Bangladesh with the necessary skills to perform reconstructive surgery for leprosy disability
further damage. She now has customised shoes to protect her feet from further disfigurement. LEPRA also referred her for surgery on her eyelids without which she would have lost her vision. Being part of this group has helped Tahomina not only to prevent and manage her disabilities, but has also given her the opportunity to meet others affected by leprosy, and a support network to build her confidence. There she met her husband Asiruddin, who also had leprosy. They are now happily married and are proud of their young son. Tahomina now knows how to protect her hands from further injury
For the past three years, she has regularly attended a leprosy self-care group run by LEPRA at a local clinic where staff have taught her how to protect her hands from burns when cooking and how to treat her wounds to prevent infection and
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newsANDNOTES
LEPRA’s work in Brazil continues after handover
Some of the people we have helped
After nearly two decades of working in Brazil, LEPRA leaves behind a strong legacy of social and rehabilitative projects that complemented leprosy services. We were one of the first ILEP (International Federation of Anti-Leprosy Organisations) members to fund projects driven by patient need, instead of a state-level approach. As the incidence of leprosy declines in Brazil and elsewhere, this decision to work in the most endemic areas was a key component of breaking the chain of transmission, something that has since been adopted by other members. In addition to targeted leprosy control initiatives, LEPRA’s projects in Brazil focused on strengthening the work of nongovernmental organisations (NGOs) and community groups, the development of self-care and support groups, and the integration of leprosy patients into general rehabilitation services. These projects went beyond the normal scope of government programmes and provided a vision for the way NGOs can truly work as a complementary partner in leprosy control. Between 2009 and 2011, LEPRA formed a productive and beneficial alliance with its ILEP partner, Netherlands Leprosy Relief (NLR). LEPRA ran NLR’s projects for two years while it was attempting to open an office in Brazil. Now that LEPRA is refocusing activity, NLR will continue many of the previous initiatives in Ceará, Paraíba and Rio Grande do Norte states that LEPRA developed over the last several years. There is even continuity of human resources as many of the staff members that worked on LEPRA’s projects over the years will continue on with NLR. LEPRA will be missed in Brazil. It paved the way for smaller, focused interventions in areas that the public sector does not always prioritise but that have a great impact on the lives of people affected by leprosy. However, we depart with the knowledge that our efforts will be sustained through our partnership with NLR and the Brazilian Ministry of Health.
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Giving through our card selection We would like to thank you for supporting and promoting our vital work through buying from our Christmas range in 2011. Our Easter cards are now available to view and order online at www.leprahealthinaction. org. Alternatively, please contact Karen Page on 01206 216731, email karenp@leprahealthinaction.org
Amazon Kindle for Christmas? Try this novel way of fundraising LEPRA supporter Janet Roberts has released her novel ‘Every Four Minutes’ with all proceeds to be donated to LEPRA. The book focuses on a character who is diagnosed with leprosy. Janet’s motivation in supporting our cause came from reading Perry Burgess’ ‘Who Walk Alone’. Her e-book is available to purchase online at www.amazon.com/dp/ B005VQUQ7U
meetTHETEAM a job at the centre where she met and married her new husband, Sukdev. One of the couple’s specialities is yoga which they teach to leprosy and HIV patients at the centre.
Taking time out after yoga - employee couple Shanti and Sukdev outside Koraput’s counselling room
Building futures: LEPRA’s role as employer In a LEPRA health referral centre in India, a woman is diagnosed with leprosy. Three kilometres away, a woman discovers she has HIV. Both are terrified because they know that stigma and its consequences have a severe impact on lives. Stigma is fuelled by lack of knowledge and acceptance. People can be unfairly and unjustly treated because of their disease and association with a certain group. This article shows how LEPRA promotes acceptance and access to employment through offering paid and unpaid opportunities to people living with HIV and with leprosy. ‘These people need our services here and it is our pleasure to provide them,’ says 28 year old Shanti, a nurse’s aide at LEPRA’s community care centre in Koraput, Odisha. The centre specialises in the care of people undergoing treatment for leprosy as well as HIV. With its trees and well-kept grounds, it is an oasis of care, calm and recuperation compared to the hustle and bustle of the town.
‘Everywhere there is stigma and discrimination, except here. I am proud to be part of the LEPRA team fighting this.’ - Shanti, nurse’s aide Srikant Sharma is 29 and has HIV. He has been a LEPRA Outreach Worker in Indore district, Madhya Pradesh since 2009. Srikant recalls his painful past of being rejected by his community and losing his job at a garment shop earning £20 a month. He attended his LEPRA interview on a borrowed bicycle and in borrowed clothes. His eyes welled up and he choked as he shared his happiness upon getting the LEPRA job: ‘LEPRA has transformed my life. I feel a deep gratitude to LEPRA.’ He now earns an acceptable wage and proudly showed us his motorbike which he was able to buy from his income. He says, ‘I now own my shirts and trousers, and the youth from my village borrow them for special occasions.’ Srikant counsels TB and HIV patients and raises awareness on these diseases across 30 villages. He is known to be one of the most diligent employees. Srikant added, ‘I was able to save the lives of 14 TB patients. When I help others, it makes me forget my pain.’ He aspires to become a laboratory technician and LEPRA is helping him to access training. LEPRA India employs many people like Srikant who find it difficult to earn a living, including those affected by leprosy. Previous beneficiaries like Srikant and Shanti are the best advocates of our work in the community and are a role model to others living with a disease. Srikant gets strength from helping others in his role as LEPRA Outreach Worker
Shanti has HIV and came to the centre as a patient and a bereaved widow. She was cast out and made homeless as a result of contracting HIV from her young husband. Weighing seven stone, she was malnourished and in poor health. With LEPRA’s help, Shanti’s condition improved. Recognising her potential, LEPRA offered her
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insideTHECOLONY
Some of Shantinagar’s older residents include Lingamma and Krishna featured in September’s LEPRA News
Of dreams and aspirations… two generations at a crossroads in Shantinagar The Shantinagar leprosy colony is located on the fringes of Hyderabad in Andhra Pradesh. It is one of the 630 colonies in India and is named after the famous leprosy hospice set up by Mother Teresa in the 1950s in Kolkata, east India. Shantinagar is Hindi for the “City of Peace.” Ironically, peace eludes many residents of Shantinagar who live there not by choice but by force, persecuted as outcasts. 8 | healthinaction
Disfigurement has left leprosy-affected people socially displaced and economically disadvantaged. For residents at Shantinagar, advanced deformities make it impossible to hold the tools of trade and people are refused jobs because of their condition. A typical day instead involves leaving the colony very early in the morning to beg at traffic lights, temples and mosques as they find it difficult to find a ‘livelihood of dignity’. People throw money and food at them. For all the pain endured after a day of begging, they take back less than £1 a day on which a family of three or four have to survive. Some of these residents spend the night on the footpaths instead of their homes so they don’t miss the early commuters next day. They have lost their self-esteem and self-respect to leprosy.
insideTHECOLONY Not only do the residents of Shantinagar face poor employment prospects, they are shunned even in death. In their community, and in others, people with leprosy are not entitled to be buried with dignity. Their burials are performed on a patch of wasteland outside Shantinagar because the authorities of public cemeteries will not allow their burial. They incorrectly believe leprosy to be contagious even after death.
hope and resigned to fate, and another that is full of dreams and aspirations. The older generation however, wishes a stigmafree future for their children far away from the leprosy colony; a future where the legacy of leprosy - a lifetime of rejection, of being unwanted, unloved and uncared for by the society, does not plague them.
The young people in Shantinagar are the second and third generation affected by leprosy. They are not infected by it. They were sent to local schools and later colleges with the help of local NGOs and individual supporters like you. Whilst the girls often marry early and leave the colony, the boys, now in their early twenties have managed to find employment in the city and are very proud that they don’t beg for a living. This second generation strongly disapproves of their parents begging on the streets; a discernible clash between the two generations – one that has lost
How LEPRA helps In Shantinagar, LEPRA’s main contact is Mr Narsappa, the President of the Society of Leprosy Affected Persons (SLAP) – an organisation voicing the rights of people with leprosy. As the World Health Organisation points out, the time has come to shift the emphasis from the medical to the social aspects of the disease. Earlier this year, LEPRA facilitated Mr Narsappa’s attendance at the WHO’s Global Programme Managers’ meeting on Leprosy Control Strategy where various stakeholders deliberated on the Enhanced Global Strategy for Further Reducing the Disease Burden due to Leprosy 2011 – 2015. In the last few years, Mr Narsappa has campaigned successfully to get 5,000 leprosyaffected people a free bus pass and disability pension. It may not seem much, but when you have to walk three hours to get to the nearest town, something as simple as a free bus pass can revolutionise your life. It also means 5,000 elderly and disabled people affected by the disease no longer need to beg for a living. To help improve the health and esteem of
The children of Shantinagar with Madhavi Sakuru, LEPRA’s Programmes Officer
the older residents, LEPRA started a Prevention of Disability clinic in the colony where ulcers are treated and wounds are dressed. They are also taught self-care practices and have been given specially designed footwear to prevent any further injuries to their wounds. It has been a challenging task to engage the young people of Shantinagar. Although LEPRA seeks to help younger children access education and train the older ones in vocational skills, questions of sustainability have surfaced as the grown-up youngsters are preparing to leave the colony. LEPRA is making every effort to remove the barriers to aspirations of the children of leprosy-affected people whilst meeting the needs of the old. It is understandable that new generations will refuse to live within such colonies, and in time these colonies will no longer have a purpose. For now, we are doing all that we can for the older generation who don’t want to leave the colony at this time in their lives. Narsappa and the people of Shantinagar have conveyed their love and greetings to all of you for the New Year.
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campaigningNEWS
Leprosy discrimination is a human rights issue Standing in solidarity: Mr Mallikarjun, Mr Mallareddy and Mr Narsappa with residents of the colony
In India, home to more than half of new leprosy cases detected each year, there are 16 laws which actively discriminate against leprosy-affected people. The discriminatory clauses are based on the Leprosy Act of 1898, enacted during British rule to protect society from infection when leprosy had no cure. This Act was repealed in 1985, as research showed that the disease was only mildly infectious and completely curable. Yet other archaic laws continue today. LEPRA actively fights for the rights of leprosy-affected people by holding public rallies and meetings, writing petitions, raising awareness through the press and media, and seeking legal advice for people who have lost their homes. Without the support of LEPRA and other NGOs, leprosy-affected people in India will continue to be prevented from participating in activities such as travelling by train and contesting or holding a post in a civic body. In some Acts, such as the Hindu Marriage Act (1955), leprosy is referred to as a virulent and incurable disease and is grounds for divorce. The housing of people affected by leprosy in the outskirts of villages, towns and cities in places labelled as leprosy colonies perpetuates isolation from the rest of society as described on pages 8-9, and prevents
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social re-integration for thousands of families. Additionally, such legislation contradicts many of the articles in the Universal Declaration of Human Rights. Such laws and government guidelines even exist in the UK today, whereby UK Border Agency immigration guidelines prevent the entry of an applicant with leprosy, despite the fact that it has been eradicated here and is curable, with 95 per cent of us being naturally immune to the disease. In March 2011, resolution ‘A/HRC/15/30’ was adopted by the UN General Assembly calling for the elimination of discrimination against people affected by leprosy and their family members. The resolution was signed by the UK government and 58 others, but not India, the world’s most leprosy-endemic country, because of the 16 discriminatory laws. Laws can be repealed by successful lobbying of government and through campaigning. In India an amendment bill to Juvenile Justice was passed in India in August 2011. It puts an end to the practice of separating children with leprosy from other infants in special homes and children’s homes: previously they were forcibly moved to treatment centres. The 1988 Motor Vehicle Act has also recently been revoked enabling those living with leprosy to obtain driving licences.
campaigningNEWS
You are helping us to fight leprosy discrimination LEPRA’s campaigning work in India can only take place with support from the British public. Together our approaches to safeguard people’s rights include: n Working
with people affected by leprosy and their state and national-level forums
n Helping
people affected by leprosy to understand their rights and legal entitlements
n Working
with state governments to bridge gaps in health services to ensure good quality leprosy services are made available through technical support units and referral centres
n Mobilising
and facilitating rallies and other advocacy campaigns to fight for their right to equal and fair treatment
n Working
in collaboration with SLAP and with individuals to provide support for the protection of rights, designing communications and ensuring quality of services and basic amenities for the 20,000 people living in 84 colonies in the state of Andhra Pradesh
The events included: a photo exhibition of the work of photographer Colin Summers who visited LEPRA’s projects in India; a rally involving students on campus to demand an end to leprosy discrimination, and a lecture by LEPRA India Chief Executive Dr Ranganadha Rao on leprosy and the effect of stigma and discrimination upon the lives of people today. Dr Rao explained during his lecture: “Stigma is a feeling, discrimination is what happens when that feeling is acted upon. This is a very dangerous thing.” Bernard Jenkin, MP for North Essex, signed LEPRA’s petition and said: “We can beat this disease if we can end discrimination.” Colchester MP Bob Russell, also pledged his support and expressed pride in having LEPRA as part of his constituency, as did Colchester’s Mayor. LEPRA is asking for: n A
review of all current UK discriminatory legislation
n A
stronger emphasis on leprosy in international relations with countries where leprosy is still endemic
n An
open endorsement of the Principles and Guidelines which accompany the resolution
Thank you for your support. You can get more involved by helping us persuade the UK government to stress this issue in its diplomatic relations with countries such as India. Sample letters can be found on our website www.leprahealthinaction.org/humanity-in-action
Campaigning in the UK LEPRA recently ran a series of events at the University of Essex, which has a strong and highly regarded Human Rights faculty. The event, which encouraged students to pledge their support to implement the UN resolution to eliminate leprosy discrimination, mirrored some of the activities taking place in India. The purpose was to enlist the support of local MPs and students in putting pressure on the UK government to actively implement the resolution.
Marte and Lily sign our petition to end leprosy discrimination. Picture courtesy of Evening Gazette, Colchester, copyright retained.
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programmeNEWS
Protecting India’s tribal people from disease: news from LEPRA’s Sahyog project Background Tuberculosis and HIV/AIDS are both major threats to health worldwide. India bears one third of the global TB burden, with some two million new cases and around 330,000 deaths every year. The prevalence rate for HIV is lower than in many other countries, yet there are over two million Indians who are living with HIV. In every country there are people who are more likely than the rest of the population to become infected. In most cases these are the poorest members of society who are also less likely to receive health care. Not only does poverty increase the risk of infection, but such diseases also make people poor and hold back the development of communities and nations. In India, some of the most vulnerable people are those who are members of what are known as the ‘scheduled tribes’ – around 84 million people (eight per cent of the country’s total population). Most of them live in geographically isolated areas and have a limited level of contact with the rest of Indian society. As a result, their communities are less well developed and are poorly served by the education and health systems. What is LEPRA doing to help? In 2008, with funding from the European Union, LEPRA launched a project in Odisha State, to support the Indian government’s Tribal Action Plan, which aims to ensure that the national TB control programme reaches tribal communities. The project focuses on three districts – Koraput, Rayagada and Malkangiri – which are home to some 1.3 million tribal people. Locally LEPRA’s work is known as the Sahyog (Cooperation) project.
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Pragati (centre) with Rupashree, LEPRA’s Outreach Worker
What has been achieved by this project so far? One of the most important achievements is the continuing success of the sputum collection centres established in 2008. These 180 centres have diagnosed over 2,000 new TB cases and conducted tests on 1,200 follow-up cases. Over 180 village health committees have been formed; with two out of three committee members being women. Sahyog held many events during 2010 to improve community awareness of TB and HIV/AIDS, including over 200 puppet shows and theatre presentations. There have been more than 200 film showings and hundreds of paintings and wall hangings are now on display in key locations. Project staff attend village health committee meetings and have trained the members of these committees to establish and strengthen a community-based referral system. Health committee members now refer people with suspected TB for testing at sputum collection centres. The project has also conducted many training courses intended to enhance the skills of doctors, laboratory technicians, counsellors and traditional healers in dealing with patients with health conditions. Since the project began, nearly 1,000 families have benefited from the distribution of grain through grain banks which offer food security during difficult agricultural seasons.
LEPRA holds
fundraisingNEWS
events across the UK and in India
smaller runs and other activities taking place across the UK. It doesn’t matter if you haven’t done anything like this beforehand or if you aren’t very fit, as long as you’re eager and happy to train in advance. There really is something to suit all fitness levels. Why not test your limits, whilst doing something to help others? The sense of achievement is unforgettable. If you contact the team, Lizzie or Karen can send you a fundraising pack and help you on your way with fundraising ideas and tips.
Get set for
2012
This year’s London Olympics is inspiring people across the country to get active and boost their levels of fitness. It has the potential to encourage people with different abilities and disabilities to get involved in sport and achieve a life-long dream or ambition. At LEPRA, we have many events to offer that could give you great satisfaction and improve your health, whilst at the same time transform the lives of others who need our help. This year, LEPRA has guaranteed places in the Paris Marathon, London Marathon, Great North Run and London Triathlon. There are also many
Recently, Isobel Thompson donned her running shoes and ran a five mile multi-terrain event to support LEPRA. Isobel said: ‘I’m not a natural athlete, so this run was a big challenge, especially as I only took up running a few months before.’ Isobel completed the run proudly wearing her LEPRA t-shirt, and was encouraged not to give up by thinking of the hardships endured every day by people living with leprosy. We are also looking to recruit people for Trekathons. These are held on various days throughout the UK. Whether you fancy dramatic scenery, quintessential English countryside, or the streets of our capital, there’s a Trekathon for you! Registration fees are just £49 and the sponsorship target is £100. These events make great trip reunions or team-building activities. For many years, LEPRA has organised sponsored Bike Rides to India, combining project visits with cycling and experiencing real India. These trips are unique and we welcome anyone over the age of 18 who is relatively fit and looking for a challenge. Sandra Horne, a keen supporter of our work, has just returned from another trip to India. A good time was had by all, and our thanks go out to all the riders who took part. We would like to hear from anyone that is interested in helping us make a difference in 2012 and sign up for a challenge. Please call 01206 216799 or email events@leprahealthinaction.org
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fundraisingNEWS Tributes paid to ‘legendary’ teacher and LEPRA supporter from Bristol Pupils and staff have paid tribute to a ‘legendary’ teacher from Yate. Ray Mardle, who was a deputy head teacher at Colston’s School in Bristol, died suddenly in October aged 53. LEPRA’s Fundraiser for Bath and Bristol, Sara Cumming, worked closely with Ray over the past few years, and represented LEPRA at a Commemorative Service held at Bristol Cathedral in November. Pupils, parents, staff and Old Colstonians paid their respects to a highly respected and dedicated man. Ray began a long relationship with LEPRA back in 1997; organising and running annual fundraising events for year 7 and 8 pupils. He was a great supporter of LEPRA’s work and established an annual spring fundraising event, which became part of Colston’s timetable.
St Helens pupils have a fun workout in aid of LEPRA
Fun and fitness at a workout with LEPRA On 6th October, girls and staff at St Helen’s School in Northwood took part in a series of aerobic workouts for LEPRA. Girls from nursery to year 13 participated in 20 minute sessions throughout the day. The smiling faces of St Helen’s participants said so much about the school’s response on being asked to support our work. They threw themselves into the activity with great enthusiasm, raising a magnificent £3,200. There is real joy that lives will be changed thanks to their outstanding effort.
Over the years, Ray’s commitment to LEPRA has raised over £14,000, and because LEPRA is such an integral part of Colston’s charity work, we will be organising a special workout event in his memory. This will take place at the school during February. Money raised will go to The Ray Mardle Fund, to support children affected by leprosy throughout their education in Hyderabad, India. The fund is dedicated to LEPRA’s UMEED Project and its wider aim to reduce the burden of leprosy, particularly within the leprosy colonies in the Indian state of Andhra Pradesh. Ray has already touched the lives of so many through his work at Colston’s and a tribute to Ray by Peter Fraser, the school’s Head Teacher, said it all: “Our pupils would simply say ‘Mardle - Legend’. How very true.” The Ray Mardle Fund will ensure that lives continue to be improved in his name. Ray Mardle 1958-2011
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Pupils of Folkestone School for Girls take part in a sponsored workout
The zumba phenomenon spreads its way to Folkestone School for Girls Pupils in year 7 took part in a sponsored workout to raise money for LEPRA. The session, held in October, proved to be great fun and was enjoyed by all participants. The pupils raised an impressive £1,653. Miss Neads, Deputy Head Teacher, said: ‘The girls have raised a fantastic sum. We are delighted!’ Well done to everyone who took part and thank you to all the families and friends who sponsored the girls so generously. LEPRA thanks Miss Neads and Mrs Mundy for their continued support.
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Sort Code (top right hand corner of your cheques)
n n n n n n n n n n - n n - n n NAME
Please pay the amount indicated on the left to LEPRA Health in Action, Barclays Bank plc, High Street,
ADDRESS
Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467
POSTCODE
For completion by LEPRA to the paying bank
DATE
This standing order form should be returned to LEPRA and not to your bank.
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Single Donation Form I would like to make a single donation to LEPRA of £ MR / MRS / MISS / MS
INITIAL
SURNAME
ADDRESS
TELEPHONE
POSTCODE
EMAIL METHODS OF PAYMENT
n Please make your cheque/postal order payable to LEPRA Health in Action n Please debit my n VISA n MASTERCARD n CAF CARD Card No: nnnn nnnn nnnn nnnn nnn Security No: nnn Expiry Date: n n / n n Signature:
by £
n Please tick if you require an acknowledgement of your gift
LN1/12
LEPRA also welcomes regular donations via direct debit. If you would prefer to make a regular donation via this method, just call 01206 216700 today and we can do the rest!
Please return this form to: FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us money if you attach a stamp to your return envelope.
!
Please treat all donations that I have made for the four years prior to this year and all donations that I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.*
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* You must pay an amount of income tax or capital gains tax equal to the tax we reclaim on your donations. You have the right to cancel this agreement at any time by contacting LEPRA in writing.
we need your help
Many people are surprised to hear that every two minutes, somewhere, someone, is diagnosed with leprosy. Yet there are no major funding sources for preventing the transmission of leprosy and the disability it causes. When we first met 16 year old Seema in India, she was finding it difficult to move her fingers or grasp small objects. Seema became unable to write and was afraid of what was happening to her body. She didn’t know what to do. Worryingly, the problem was getting worse. Without diagnosis and treatment, Seema’s condition could have left her fingers bent, immovable and useless, preventing her from using her hands. She may not have been able to continue at school. The nerve damage that she was starting to experience, could have led to burns developing into ulcers. In a country where financial security for most women is
tied to marriage, many laws still make leprosy valid grounds for divorce. Young women with leprosy can find themselves rejected by society, considered unworthy of marriage or having a family of their own. Yet for Seema, diagnosis wasn’t too late. LEPRA referred her for treatment and because her condition was detected and cured early, Seema can move her fingers as before. Her symptoms were reversible, and she can write at school and help at home; she doesn’t have to hide her hands, feel embarrassed or fear cruel remarks. On the day that LEPRA’s Communications Officer, Nicolette Dawson took this photo, Seema had taken the day off school specially. She wanted to say ‘thank you’ and show how well she could move her fingers. Without the compassion and generosity of our supporters, that would not have been possible. LEPRA relies on donations from the UK public to fund our work with leprosy, re-shaping the future for thousands of people like Seema in India and Bangladesh.
Please return the form on the reverse to: FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us money if you attach a stamp to your return envelope.
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