Winter 2018
LepraNews lepra.org.uk
In this issue Our new partnership with luxury shoe designer, Aruna Seth How you can get involved with World Leprosy Day, 28th January
Patron: Her Majesty The Queen
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LepraNews
Winter 2018
Don’t be a stranger You might remember from your last copy of Lepra News that we are moving to opt in communications this May.
An evening at Edinburgh Castle In September, our Chief Executive Geoff Prescott and Brigadier Charles Ritchie, CBE, hosted an evening at Edinburgh Castle in the presence of His Royal Highness, The Duke of Gloucester, Vice President of Lepra. The event began with the sound of bagpipes played by a Gurkha Pipe Major, followed by a dinner for guests to learn about our work to beat leprosy.
In this issue Page 3
A visit to the Blue Peter Research Centre
Page 4
You can make a difference this World Leprosy Day
Page 5
Mubarak’s story
Page 6
Taking steps to beat leprosy with Aruna Seth
Page 7
Our fantastic supporters
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Dates for your diary
Join in the conversation and follow us on social media:
Facebook.com/LepraHealthinAction @Lepra_HinA Instagram.com/lepra1 Pictured on the front cover is Mubarak. You can read more about the impact leprosy has made to his life on page 5.
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The Big Give We’re so pleased to announce that thanks to the generosity of our supporters, over £32,000 was raised from the Big Give Christmas Challenge – and in only 7 days! The funds raised will help train more female Community Champions to find, treat and support women and other marginalised groups affected by leprosy. P.S. You can see a photo from our Christmas Bazaar, which launched the campaign on page 7.
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A visit to the Blue Peter Research Centre I have been a trustee of Lepra since 2015 and my background is in tropical dermatology. Late last year I visited the Blue Peter Research Centre in Hyderabad to learn more about the work undertaken at this important facility. The centre was set up from funds raised during the 1996 Blue Peter television appeal, where viewers across the UK raised over ÂŁ2.7 million for Lepra. The centreâ&#x20AC;&#x2122;s multi-faceted work includes assessing the impact of our projects, providing treatment and training medical staff, in addition to research. My main focus was on the research that ranges from studies of why treatment for leprosy can sometimes fail, to understanding the development of ulceration in leprosy patients with nerve damage and the disability that occurs following limb swelling that characterises lymphatic filariasis. Understanding the reasons why treatments fail, or have to be extended beyond a normal time frame, in leprosy is a very complex process and it involves recognising that non-compliance of treatment and resistance to antibiotics can affect the recovery process. The latter, while not a common problem in leprosy is under close surveillance. This is because it is not possible to test the bacterium that causes leprosy outside the human body. The technique for studying resistance involves the detection of inherited material or genes that cause
resistance â&#x20AC;&#x201C; a process that the Centre is uniquely positioned to study. One of the consequences of leprosy is irreversible damage to nerves which means that the skin, having lost sensation, is easily damaged and a nonhealing ulcer forms at points of injury. Understanding how ulcers form is a focus of current research work that will potentially lead to strategies to prevent this disabling complication. An exciting longer term challenge is to identify a simpler method of diagnosing new leprosy cases. At present this relies on careful visual inspection, a skilled and very time consuming process. Identifying a suitable marker has proved very difficult although similar techniques are widely used in other diseases. But this is a challenge that the staff at the centre are currently working on. I came away with admiration for the dedication of the team and a deeper understanding of the scale of their task.
Rod Hay, Trustee
P R OJ E C T U P DAT E :
Nutrition education In July 2017, we began a new programme to help improve the health and wellbeing of people affected by leprosy in the Bogra district of Bangladesh. Funded by the Sasakawa Memorial Health Foundation, our project works to raise awareness of the importance of maintaining a healthy and balanced diet. Prior to our support, only 10% of women could identify a healthy meal option. So far, our team have trained 12 women from self-help groups to become Nutrition Representatives and from this, they have reached 120 people with cooking demonstrations for healthy and tasty meals and conducted talks within their groups and communities. Pictured: A Nutrition Representative carrying out a healthy cooking demonstration
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LepraNews
You can make a difference this World Leprosy Day This year, World Leprosy Day falls on Sunday 28th January. It’s been observed since 1954 to help raise awareness of this forgotten disease and this year’s theme is “Children without disabilities.” The latest leprosy figures show that in India, reported cases are at a 10 year high. This increase gives us even more reason to speak up and ensure that more people are found and treated early to reduce disability in children and adults. We hope that you will join in with us this World Leprosy Day and help to raise the voice of people affected by this disease.
What we’re doing Taking the airwaves by storm Lepra Ambassador, Victoria Hislop will be talking about the effects of leprosy and our work to beat this disease on UK radio stations on Friday 26th January. Keep an eye out on our social media channels for updates about when and where you’ll be able to listen in.
A visit to Parliament We’ll also be hosting an event at the House of Lords in London to engage with faith communities and professionals within the international development sector.
Winter 2018
India and Bangladesh take action Our team in India are organising their annual Walk to Beat Leprosy where supporters will walk a two mile route in Hyderabad to raise awareness and funds. In Bangladesh, our team are planning to participate in a rally alongside other organisations working to help people affected by leprosy.
How you can help Tell somebody you know By simply passing your knowledge about leprosy and our work on to your friends and family, you will help to ensure that more people know this disease still exists.
Don’t call me a ‘leper’
Leper
The term ‘leper’ was once used to describe people affected by leprosy. Sadly, over the years, this term has fuelled stigma through being associated with somebody who is an outcast. If you hear this word in conversation, please let the person know that leprosy still destroys lives today and that ‘leper’ is no longer the correct term to use.
Join in with our online conversation Social media is a powerful tool to share important issues. That’s why we’re going to be tweeting all day on 28th January and we’d love for you to join in too! Visit lepra.org.uk/world-leprosy-day to see our ideas on what to tweet. You can also download a special banner for your profile and find out how to add our World Leprosy Day “Twibbon” to publicly show your support to your friends and followers.
The impact of raising awareness Our research has shown that sharing the message that leprosy is curable is one of the most effective ways to break down stigma. This has helped to reduce negative and discriminatory attitudes by 34% in only one year*. We hope to carry out even more events in India, Bangladesh and Mozambique to ensure greater numbers of people understand the symptoms of leprosy, seek treatment and no longer fear diagnosis. *Information obtained by Lepra in Bangladesh from a survey of 400 people
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Mubarak’s story Mubarak is just 12 years old. In his young life he’s already had to deal with disability, stigma and separation from family members because of leprosy. When Mubarak started feeling weakness and discomfort in his left foot, his mother, Sabana, took him to a local doctor. At first, he was diagnosed with polio, but, as time went on, his disability became worse. Desperate, his mother sought a second opinion and he was eventually diagnosed with leprosy. However, he was provided with limited medicine – and didn’t receive any disability support services. Over the next few months, Mubarak showed no sign of recovering. Sadly, he lost sensation in his feet, and due to an injury, had to have his toe amputated. He was taken to other doctors and even admitted to hospital for a month. But when treatment became too expensive, Sabana made a difficult decision. “When I came to know Mubarak had leprosy, I was very upset”, she says. “When he didn’t get any better, I knew that medicines were available in government hospitals in Delhi where my sister lives. I asked my husband to come with me to get treatment for our son, but he said he didn’t want to. I took all four of my children alone and we boarded the train to Delhi.” At our referral centre in Delhi we provided Mubarak with the free multidrug therapy (MDT) and physiotherapy. We created specialist footwear for him, which now helps to protect his feet and incorporates an appliance to help strengthen his ankle muscles so he can lift his foot and walk with greater ease. Mubarak will need to wear the appliance and take MDT for six months. If his condition doesn’t improve, he may also need reconstructive surgery. Pictured: Mubarak with his mother Sabana
Mubarak’s story shows how damaging a late diagnosis can be. He has been left with disabilities which could have been prevented, while his family has been uprooted and separated. All of this could have been avoided had the medical staff in his community It’s thanks to recognised the symptoms of leprosy and issued supporters like you that the correct treatment. As with so many other cases, leprosy has not only caused disability – but a great deal of emotional trauma. Both his father and his extended family have rejected him and have refused to offer any support. We have provided the family with a place to stay and helped Sabana to find work at the local hospital.
we are able to help Mubarak, and many more children like him, by providing the correct treatment and care they need to recover and move on with their lives.
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LepraNews
Taking steps to beat leprosy with Aruna Seth
Pictured: Aruna Seth
We’re pleased to tell you about our exciting new partnership with Aruna Seth – the luxury shoe designer who is best known for dressing celebrities such as Pippa Middleton, Katherine Jenkins and Kate Hudson. Aruna, whose beautiful creations often feature a delicate diamante butterfly, has decided to spread her wings by selling designs with small manufacturing defects and donating 10% of the profits to help people affected by leprosy. We caught up with the designer to find out more: “Before working with Lepra, I thought that leprosy had been eradicated. I have family ties in India and when I found out that it’s a country where hundreds of thousands of people are still diagnosed every year – I knew I had to do something to help.” Aruna’s new ‘I’m not perfect’ range embraces imperfection and allows her customers to support people affected by leprosy. “The concept is simple: shoes which carry minor imperfections such as scratched satin, missing crystals or scuffed soles are sold at a fraction
of their normal price and 10% of the profit is donated to Lepra.“ Aruna adds: “I pride myself on crafting the perfect pair of shoes but it always seemed a little sad to me that these shoes, with tiny imperfections could not realise their destiny. Now they’ll make people happy and improve the lives of people with leprosy too.” Providing protective footwear is such an integral part of our work. They allow people living with disabilities caused by leprosy and lymphatic filariasis to go about their daily life with a reduced risk of injury and infection. The footwear enables people to walk in comfort, which helps adults to return to work and earn a livelihood and children to return to school – increasing their chances of a brighter future. Anachal, (pictured below, on the left) is 12 years old and lives in the
Indian state of Bihar. The blisters on her feet meant that she was unable to go to school which left her anxious about her future. After receiving treatment, physiotherapy and a pair of protective shoes, she is now fighting fit and studying hard to become a doctor. Last year, thanks to our supporters we were able to provide 37,500 pairs of protective footwear in India, Bangladesh and Mozambique. For every pair of shoes sold from the ‘I’m not perfect’ range, 10% of the profits will be donated to change the lives of people affected by leprosy. The average donation amount is enough to provide protective footwear for three people affected by leprosy. If you would like to find out more about our partnership and to buy your own pair of shoes from the “I’m not perfect” range visit lepra.org.uk/aruna-seth Pictured: Anachal with other people affected by leprosy
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Our fantastic supporters Over the past few months we’ve seen some really creative fundraising activities and we cannot thank our supporters enough for their commitment to helping people in need. We can’t wait to see what you all have planned for 2018 – so here’s to another year of raising funds to change the lives of people affected by leprosy!
A mixed bag of friends tackle The Three Peaks
Our first-ever Christmas Bazaar We launched the Big Give Christmas Challenge with a bang when we hosted a Christmas Bazaar at our Colchester office. Our guests enjoyed mince pies and mulled wine, stocked up on Christmas presents from local craft stalls and listened to carols from the Highwoods Singers of Highwoods Community Primary School choir.
Team ‘Mixed Bag’ are a group of colleagues and friends who took the challenge to trek up and down Scafell, Ben Nevis and Snowdon – the highest mountains in England, Scotland and Wales. They did it all in under 24 hours and their amazing efforts raised over £4,000 in total. Richard Myerscough, who took part in the challenge said, “It was definitely worth it when you consider how many people can be cured from leprosy through the funds that were raised.”
A frosty fundraiser A student from Lordswood Girls School in Birmingham got creative for Christmas by making some flashing snowmen decorations. She sold 25 in total and raised an honourable £25 – enough to provide eight pairs of shoes for people affected by leprosy.
Have you got a fundraising event planned? We’d love to know! Email fundraising@lepra.org.uk to share your activities and we’ll be sure to share on our social media channels. It may even get featured in the next issue of Lepra News.
An afternoon of tea and cake with Victoria Hislop In November, author and Lepra Ambassador, Victoria Hislop held an afternoon tea at Edinburgh’s City Chambers to raise awareness of our work and talk about her latest novel “Cartes Postales from Greece”. Victoria also hosted a special Q&A session about writing her first novel “The Island”, a story which is set on the former leprosy colony of Spinalonga in Crete.
LepraNews
Dates for your diary
We have plenty of challenges coming up for you, or somebody you know, to take part in throughout 2018.
Winter 2018
International Women’s Day - 8th March Show your support for women affected by leprosy on International Women’s Day by hosting a life-changing tea party! See our enclosed leaflet for more details.
Photo credit: Ride London
You can also get involved with our virtual life-changing tea party by taking a ‘selfie’ with a mug of tea and posting on Facebook or Twitter on 8th March using the hashtag #ShowYourMug.
A legacy that changes lives By choosing to leave a gift in your Will, you’ll leave a legacy that plays a crucial part in working to beat leprosy.
Edinburgh to St Andrews - June The oldest cycle ride in Scotland is back for its 39th year. Join hundreds of other cyclists in a historic ride where you’ll cross the Forth Bridge and pedal through the picturesque countryside before finishing in the coastal town of St Andrews. Keep an eye out on our website soon for registration details.
If you would like to take part in any of these events, visit lepra.org.uk/events To find out more email events@lepra.org.uk or call 01206 216700
Ride London - 29th July Have you ever fancied riding in the path of Olympic athletes? Take part in Ride London and ride the famous 2012 track where you’ll weave through central London and then take in the beautiful sights of the city’s surrounding villages.
Long-term supporter, Rachel Leach shares why she chooses to support people affected by leprosy. “My dad worked for Lepra in Tanzania and he was very passionate about helping people with leprosy to overcome the stigma of this disease. Because of my strong family connection with Lepra, I always look back fondly to times my parents and I raised funds throughout my childhood and still choose to support the charity to this day.” To find out more about leaving a gift in your Will, download our free information booklet at lepra.org.uk/gift-in-your-will. You can also telephone 01206 216700 or email donorsupport@lepra.org.uk.
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Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206 216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland)