Autumn 2017
LepraNews lepra.org.uk
In this issue The devastating effects of stigma Our Annual Impact Review 2016 – 17 Patron: Her Majesty The Queen
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LepraNews
Autumn 2017
An afternoon at Buckingham Palace
London Marathon The final count is in and we’re very pleased to announce that Team Lepra raised over £23,000 from running the Virgin Money London Marathon. A huge thank you to Tom Barton, Shawn Benson, Claudia Daventry, Alejandro Demichelis, Rebecca
Emmett, Chris Hope, Kieran Murphy, Rasmus Norgaard, Peter Østrem, Phil Parkes, Victoria Thwaites, Sangeeta Wagh and Laura West who were our champion runners this year!
Inspired to run?
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A A date date for for your your diary: diary:
Join Team Lepra in the 2018 London Marathon by registering through our website: lepra.org.uk/events
In this issue Page 3
Earlier this year, we were delighted to attend a special afternoon tea at Buckingham Palace kindly hosted by His Royal Highness The Duke of Gloucester KG GCVO, Vice President of Lepra. Our Chair of Trustees, Charles Bland shared the impact of our recent active case finding work with honoured guests, including Bihar State Coordinator, Rajni Kant Singh.
Plane rides and prejudice
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How would you like to hear from us?
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Leave a lasting legacy
Exciting times are afoot! We’re taking part in The Big Give Christmas Challenge, which offers our supporters a unique opportunity to double online donations to our Christmas Appeal. To double your gift, all you have to do is donate to us online via the Big Give website from 12pm (midday) on Tuesday 28th November to 12pm (midday) on Tuesday 5th December 2017.
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Mamta’s story
You find out more about the Christmas Challenge and how to double your gift at lepra.org.uk/the-big-give
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Our inspiring supporters
You can also visit our Twitter and Facebook pages nearer the time to find out more.
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30 seconds with Jamie Chadwick
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Our impact
Keep up to date with our latest news on social media:
Facebook.com/LepraHealthinAction @Lepra_HinA Instagram.com/lepra1 Our front page features Mamta, her story of heartbreak and stigma is featured on page 6.
Your support is changing lives and vastly contributing in the fight against leprosy. Find out more by reading our Annual Impact Review for 2016 – 17 which is enclosed in this issue.
lepra.org.uk
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Plane rides and prejudice
Jennifer Mangeard-Lourme, Programmes Officer for India shares how prejudice damages the lives of those affected by leprosy. On my first visit to our projects in India last year, I got chatting to a flight attendant who became increasingly concerned when I told him I was going to Bihar to support people affected by leprosy. He told me not to go, to stay away from people affected by the disease and when I departed the plane he whispered, “be careful” to me, with the most genuine look of unease. I did go to Bihar and Odisha afterwards, where I quickly learned why the steward was worried. Poverty, insecurity and social isolation are just some of the issues people living with leprosy are faced with. It was extremely hard to witness. But, contrary to the steward’s thoughts, it helped me to understand that this was exactly where I needed to be. Leprosy often affects those who are most vulnerable, who live in poverty in the developing world. These people aren’t represented how they should be in national statistics. They become invisible, unaccounted for and they are often left to deal with the severe consequences alone.
Today, receiving the cure only solves part of the problem. Leprosy never leaves you in peace – it chases you with ulcers, infections, disability, depression and anxiety. Stigma often means that people hide their symptoms, many face issues such as divorce, exclusion and some are even cast out of their communities. Leprosy carries little sense of urgency for the authorities, which is perhaps due to its progressive nature and the fact that long-term effects often only arise after years without treatment. It is a sad reality for the people who live with this disease. They manage to live on despite pain, disability and stigma, which, in mainstream society, makes them a lesser priority to help. During my visit, I was humbled by the efforts and intelligence that is going into the fight against leprosy. I met some very courageous people on my travels. A husband who supported his wife in getting treatment where others would have divorced her, two young girls at a reconstructive surgery clinic developing
a friendship, a mother who has cooked her son’s every meal for the past 20 years despite her severe disability – the list goes on. The battle against leprosy has not yet been won and it’s affecting too many people in our world today. It goes to show that many still struggle to relate and care for the most vulnerable of us and for this to change, we need to innovate, collaborate and advocate for the people who need it most. I will keep going back to Bihar and some of the other most disadvantaged areas of India, and on the way there, I will try to convince every worried flight attendant I meet to come along with me.
Jennifer meets some of the people we support, during her first trip to India
Nizamabad appeal update Last year, we launched an emergency appeal after the drastic increase of people diagnosed with leprosy in the city of Nizamabad in the Indian state of Telangana. Through the generosity of our supporters, we raised £1,200 which enabled us to train 140 new volunteer workers, screen 182 villages and diagnose and treat 32 new cases of leprosy.
Do you want to receive details about other emergency appeals and to keep up to date with our projects? Sign up to our monthly newsletter at lepra.org.uk/join-our newsletter
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LepraNews
Autumn 2017
How would you like to hear from us? To make sure we are contacting you using your preferred methods, we are moving to “opt in” only communications in May 2018. This means that after May, we will only be able to contact supporters who have confirmed that they would like to continue to hear from us. We have made this decision because we want to make sure our donors are contacted only as they wish. This change also allows us to be more environmentally friendly and cost effective with our communications. It also means we can ensure that we are in-line with any future changes to data protection legislation.
What does this mean for you?
Want to tell us your preferences sooner?
To ensure that we are contacting you in the ways you prefer, we will be sending you a letter over the coming months which will include a contact preference form.
Email our Donor Support team at: donorsupport@lepra.org.uk
If you are still happy to hear from us, please complete the form and return it to us. Alternatively, you can complete the Contact Preferences section on the back of the enclosed donation form and send it back to us in the freepost envelope provided (you do not need to include a donation, unless you wish to).
Your details are safe with us Your details are always kept safe with us and stay within our organisation. We do not sell or share your personal information to any third parties. For more information read our Fundraising Promise at lepra.org.uk/our-fundraising-promise
You can choose to continue to hear from us by post, email, or both. From there, we’ll make sure that you don’t miss out on hearing about the difference your support is making, our latest news and how you can continue to get involved in our work.
Want to find out more? If you would like to find out more information about our “opt in” policy and the benefits, please contact our Donor Support team who will be happy to help. 01206 216700 donorsupport@lepra.org.uk
lepra.org.uk
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Leave a lasting legacy A gift in your Will is a powerful way for your support to live on into the future.
We believe in a world free from leprosy. Your Will is a testament to you and your beliefs and if you share ours, you can help us continue to fight this disease in the future. There are more than 7 million people living with the effects of leprosy today that need help. By remembering us in your Will, you can help to find and treat the hidden people living with leprosy and provide life-long care to those left disabled by this disease. Your legacy can also help to plan and fund new projects and enhance our existing ones to ensure no one has to suffer from this curable disease.
Here’s why some of our long-term supporters continue to help beat leprosy:
A gift in your Will can give people a fulfilling future £140 trains 30 government health care to recognise leprosy symptoms and ensure cases are treated quickly.
£3,211 pays for a surgeon to undertake 450 reconstructive surgeries in a year, allowing patients to regain the use of their hands and feet and prevent them living a life of poverty. £13,200 pays for a new health education van, allowing us to raise awareness about leprosy to whole communities across India, Bangladesh and Mozambique.
“Leprosy ought to be confined to history books. I support Lepra because they champion individuals who suffer from leprosy and its dreadful after-effects. Their organisation helps families and communities and they aren’t afraid to tackle political indifference and hostility.” Julia
“We first discovered Lepra when we lived in Malawi during the late 1970s. We saw that in such a poor country, health was a vital issue for which the people could not always afford treatment.” David and Meriel
“I continue to support Lepra as I wish to see a day when leprosy is entirely eliminated.” Ray who first heard of Lepra through a radio appeal in the 1940s
63% of our overall funding comes from gifts in Wills. This generosity allows us to take bigger steps towards a day when leprosy no longer exists.
Request an information booklet If you would like to find out more information or request a copy of our legacy booklet, please visit our website lepra.org.uk/gift-in-your-will. Or, you can contact our Donor Support team by telephone or email: 01206 216700 donorsupport@lepra.org.uk
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LepraNews
Autumn 2017
Mamta’s story Mamta is 23 years old. She and her husband married last year, however, unlike most newlyweds, her first year of marriage has been full of uncertainty, heartbreak and stigma. This is because, shortly after her wedding, she was diagnosed with leprosy.
We met Mamta in Delhi, where she was receiving treatment at our referral centre for blisters on her hands. This is a common allergic reaction from taking multi drug therapy. Initially, she sought diagnosis in her home town of Maina in Bulandhshahar, but moved to Delhi to live with her family after her husband left her. She says, “The moment my husband came to know I had leprosy, he said, ‘I don’t want to be with you anymore. You will have to go and stay with your parents. You can take care of yourself.’” Too many women have stories like Mamta’s, where the stigma linked with a leprosy diagnosis has led to the breakdown of their marriage. Despite the repeal of the 1898 ‘Lepers’ Act last year – a law which allowed somebody to divorce their spouse due to a leprosy diagnosis, cultural practices still perpetuate this prejudice which often leads people affected by leprosy to be cast out of society – even by their own families.
The long-standing stigma of leprosy can also stem from fear of infection and the belief of some, that a person living with the disease is cursed. Today, there are still 20 laws which discriminate against people with leprosy. Many people are faced with taunts and violence; they are pushed out of public places, can no longer return to their jobs and are often shunned from their communities.
It’s thanks to supporters like you that we are able to help people like Mamta, whose lives have been damaged by the stigma of this disease. Our health education sessions in communities raise awareness of the symptoms and the cure available. This new understanding works to reduce stigma and allows for more acceptance so people affected by this devastating disease no longer have to live in the shadows of society.
Mamta’s husband has now filed for divorce so she will continue to live with her parents. “I cannot go back to my in-laws because there is stigma there” she says, “By the way my husband talks, I know that he’ll never accept me again. My parents always tell me they will look for another partner for me. But I don’t want anybody else.” We are working to transform Mamta’s life with physiotherapy, self-care, counselling and by providing her with livelihood training to help her become financially independent.
“The moment my husband came to know I had leprosy, he said, ‘I don’t want to be with you anymore.”’ Mamta
lepra.org.uk
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Our inspiring supporters
The oldest cycle ride in Scotland Back in June, hundreds of cyclists rode our 68 mile route from Edinburgh to St Andrews. We’d like to say thank you to everyone who pedalled against poverty and have raised £14,000 so far. Keep an eye out on our website in early 2018 to register for next year’s event!
Cake sales, buckets of mud and sponsored silences! The students of Lady Manners School raised £4,400 by taking part in fundraising activities from cake sales and sponsored silences to mudbucket challenges and trampoline flips. Thank you for all of your hard work and support!
Dedication to helping those in need
An afternoon cycle along the Thames
Students from Penns Primary School have recently shown dedication to helping those living with leprosy and between 30 children, they raised a fantastic total of £1,000. They took to the challenge by selling their old toys, washing cars, running bake sales and competitions.
Our young supporters from Whiteknights Church in Reading challenged themselves to cycle a 10 mile route along the River Thames. The group raised an impressive £800 and celebrated in style with a slap up picnic in the sunshine by the river.
A medieval pilgrimage to beat leprosy Our supporters from the Knights of Medway set off upon a 5-day trek in full armour from Pilgrim’s Way to Canterbury Cathedral in partnership with the South East Co-op. We are so proud of them for completing the challenge and we are pleased to announce that they raised £2,300. We would also like to honour Gregory Hodgeman (otherwise known as King John), who was part of the group, but sadly passed away shortly after the walk due to a long-term illness.
60 seconds with Jamie Chadwick We recently caught up with 19-year-old racing sensation, Jamie Chadwick – the youngest winner of the British GT Championship. We’re thrilled that she’s chosen to feature Lepra on her racing car this season! When did you first become interested in racing? I got into motorsport almost by accident at the relatively late age of 11. My brother, Ollie, was racing karts and my dad suggested I have a go. I immediately loved it – the excitement at the circuits, the sensation of speed, the racing – and I also enjoyed the technical side.
What made you want to pursue it as a career? It was when I won the prestigious 2013 Ginetta Junior Scholarship at the age of 14, that I started to see the bigger picture and that a career as a racing driver could be possible.
What do you think has motivated more female drivers to take to the tracks? Given that driving has historically been a male dominated sport. For me personally, I really don’t think about it. I just get on with the job that needs doing. However, I am aware that some people will judge me by my gender. I want to show that given the opportunity and support, girls can match and even beat the boys in racing.
What advice would you give to anybody wishing to take up motorsport?
Is running more your thing? Why not embrace a challenge and join Team Lepra on 22nd April 2018 at the Virgin Money London Marathon? It’s an exhilarating event that’s not to be missed and it helps to raise vital funds to beat leprosy. To guarantee your place, the registration fee is just £50 and the minimum sponsorship target is £1,650, excluding gift aid.
“If you are thinking about running the marathon, the best advice I have is just do it! Also, the team at Lepra have been very supportive from day one and that has made a huge difference.” Alejandro Demichelis, 2017 marathon runner Beat the ballot and secure your place at the 2018 London Marathon today at: lepra.org.uk/events
Enjoy it! People race at different levels, sometimes with limited budgets and often experiencing highs and lows. But the priority is to do your best, enjoy the good times and make lots of friends.
We see you are showing support for Lepra on your car? Yes, my mum has been a supporter of this important charity for a long time and it’s very sad to see so many people still suffering from leprosy. So, of course, anything we can do to help raise awareness, the better.
Facebook.com/LEPRAHealthinAction @Lepra_HinA
Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland)