Lepra News Winter

Winter 2019

lepra.org.uk

In this issue New Faces of leprosy John Bradburne Memorial Society and Lepra

Patron: Her Majesty The Queen

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LepraNews

Winter 2019

Welcome to Lucy Fenna Lucy is the new Challenge event lead at Lepra.

After joining Lepra in 2019 as a Fundraiser, Lucy is excited to be moving into this new role. Lucy will now lead on organising and coordinating events such as the upcoming London marathon and Ride 100. Lucy will be coordinating and promoting an extensive range of challenge style events so please do watch this space.

One Lepra In September, our colleagues from India and Bangladesh joined Lepra at the 20th International Leprosy Congress (ILC) in Manila. The congress brought together NGO’s, researchers, scientists, health staff and individuals affected by leprosy to share their knowledge and expertise.

There is a renewed desire within the international community to combat rising leprosy rates and Lepra staff presented many ideas about the future of leprosy across the world. The education did not stop in Manila though, with several of our colleagues travelling to the Neglected Tropical Diseases NGO Network (NNN) Conference in Liverpool in September. The NNN promoted the idea of ‘many partners, one voice’; a theme Lepra has adapted to our own organisational structure. Following these conferences, our colleagues from Lepra India joined us in our Colchester hub to engage in a range of strategy sessions. Lepra and Lepra India have worked together for decades to change the lives of those affected by leprosy. We are committed to working collaboratively to achieve our joint strategic goals across the countries in which we work.

Our strategy sessions were focused on Active Case Finding, Programme Planning, International Relations, Advocacy and Fundraising amongst other wide ranging topics. Underpinning this was the need to ensure the best for those affected by leprosy, and looking at new and exciting ways to develop our work and understanding of leprosy as a global health problem. As One Lepra, we will continue to build on these foundations to enhance our joint strategy and strengthen our key relationships.

“I have loved every moment of my time with Lepra so far and I’m looking forward to working in this new and exciting role! Fundraising is an important part of what makes a charity work and I’m excited to be involved in new and diverse ways of fundraising.”

We are pleased to welcome Lucy to her new role and wish her the very best of luck.

In this issue Page 3

Rotary International and Lepra strive to beat leprosy

Page 4

New Faces of leprosy

Page 5

John Bradburne Memorial Society and Lepra

Page 6 & 7

Fundraising stories and upcoming events

Page 8

Vikash’s story

Join in the conversation on social media: LepraUK

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Rotary International and Lepra strive to beat leprosy On the 21st October, Lepra signed a historic Memorandum of Understanding with the rotary clubs of Delhi South, Delhi Southend and New Delhi. These clubs are members of Rotary International, an organisation that boasts more than 35,000 clubs in over 200 countries.

The Memorandum of Understanding is focused on working in partnership to establish the ‘Control of Leprosy in India’. A pilot project will be developed to create a showcase of a model leprosy awareness and case detection campaign.

Geoff Prescott, Lepra CEO, Rukmini Rao, Chair of Lepra India and Charles Bland, Chair of Lepra attended the historic signing event in New Delhi, along with PRID Yash Pal Das and DG Rtn Suresh Bhasin as guests of honour.

Geoff Prescott said, “We are starting small, but from small seeds great things grow. Leprosy is

not going away; we need to work with influential partners like Rotary who can help spread the word. We hope for other rotary clubs to join in the battle.”

With the support of the Delhi South, Delhi Southend and New Delhi rotary clubs, Lepra hopes to build on our robust active case finding model so that the incidence of untreated and undiagnosed leprosy cases decreases significantly across India. Last year, Lepra screened, diagnosed and treated 40,546 people with new cases of leprosy.

It is Lepra’s intention to increase this figure through its new partnership with the rotary clubs

Dr Aprue Mong On the 30th October, Lepra said farewell to our esteemed colleague Dr Aprue Mong. Dr Mong served as the Country Director in Lepra Bangladesh for 12 years. Qualified in medicine and surgery, Dr Mong was an invaluable asset to Lepra Bangladesh.

His passion for those affected by leprosy allowed him to drive for changes to government health policy. Dr Mong said, “When I came to work with Lepra, I knew we needed to do something big. The Bangladesh health system was not responding to the leprosy problem in the country and the government were not helping those in need.” Dr Mong will work with Lepra in an advisory capacity and will continue to use his skill and passion to change the lives of those affected by leprosy. His successor, Dr David Pahan, will take up the role of Country Director in Lepra Bangladesh.

of Delhi South, Delhi Southend and New Delhi.

If you are interested in finding out more about how to get involved, please do make contact with Karen on 01206 216700

Rajni Singh wins prestigious award Our Lepra India colleague, Rajni Singh, was awarded the Mphasis Universal Design Award at the India International Centre in New Dheli. Rajni developed a ‘Mobile Foot Care Unit’, which delivers protective footwear to those in remote and isolated regions of India. His work allows for those in these remote regions to access the necessary lifesaving treatment and care they need. In his capacity as Bihar State Coordinator for Lepra India, Rajni has dedicated 20 years of his life to helping people affected by leprosy and lymphatic filariasis. It is a huge achievement for Rajni and we would like to wish him massive congratulations.

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LepraNews

Winter 2019

New Faces of leprosy In November, Professor Lockwood, an infectious disease physician, the only leprologist in the UK and a Trustee at Lepra, visited India with acclaimed photographer Tom Bradley. Whilst in India, Professor Lockwood and Tom travelled to Lepra's Mahbubnagar Referral Centre, our Nallakunta Referral Centre and the Blue Peter Public Health and Research Centre in Hyderabad. During these visits, they met with many people we support and heard about their interesting stories and the struggles they have faced. Funded by a social engagement grant from the London School of Hygiene & Tropical Medicine (LSHTM), the purpose of the project is to create a positive image of leprosy and give a voice to people affected by the disease.

More than half of people with newly diagnosed cases of leprosy develop anxiety and depression because of the prejudice surrounding the disease. The New Faces work hopes to demonstrate how curable leprosy is and that many of the severe disabilities often associated with leprosy can be avoided if diagnosis and treatment is started early. During her visit, Professor Lockwood said there is much work to do with regards changing people’s perception of the disease.

She said, “The New Faces of leprosy work is important because it highlights how people can still have normal lives, even with leprosy. Mothers are still mothers, teachers are still teachers – the disease does not discriminate and it should not stop someone from pursuing their career or living their life.”

For more information on our exhibition, check out our website: www.lepra.org.uk/events

These photographs, documenting people’s real lives and real stories, will serve as a reminder that people of all occupations and backgrounds can be affected by leprosy, but most importantly, these people can be treated and cured. The photographs will be toured across the UK during 2020, telling the story of each person photographed. The exhibition is due to launch in the London School of Hygiene and Tropical Medicine in London on the 26th of January, marking World Leprosy Day.

A legacy of hope Leaving a gift in your will can help change the lives of others!

By leaving a legacy in your will to Lepra, you can help fund vital projects that support the 7 million people known to be affected by leprosy. Your gift could: • Offer education to recognise the symptoms of leprosy • Provide treatment to improve the symptoms or cure them • Deliver a network of support to help people overcome prejudice and discrimination • Help to permanently change lives, and beat leprosy

£12,800

could fund the running cost of West Delhi Referral Centre, which provides access to medical supplies, specialised footwear and self-help groups for those affected by leprosy and lymphatic filariasis (LF).

£18,500

could cover the cost of one of our Mobile Shoe Vans travelling to rural, isolated parts of India, which provides access to treatment, health advice and protective footwear for those affected by leprosy and lymphatic filariasis (LF).

Request an information booklet - If you would like to find out more about legacies, or request a copy of our legacy booklet, please visit our website www.lepra.org.uk/gift-in-your-will. Or you can contact Karen by telephone 01206 216700 or email donorsupport@lepra.org.uk

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John Bradburne Memorial Society sign Memorandum of Understanding with Lepra Although officially eliminated for more than a decade, there are growing concerns amongst international and medical professionals that leprosy is, in fact, on the rise.

Leprosy work around the world had suffered as a consequence of WHO’s declared ‘elimination’ of the disease in most countries in the early 2000’s. This led to a rapid decline in the amount of medical professionals who had the skills and knowledge to identify and treat this chronic disease, together with a decrease in funding, knowledge and interest in leprosy as a public health concern.

1960’s, he decided he would stay and help in any way he could.

Father Alfred said, “Before he came, it was dreadful. People were removed from their homes and their families. Mutemwa was far away from everything. Some people got leprosy while working in Zimbabwe and could not return home to their own countries. Even now, they remain here and do not know if their relatives are still alive.”

In November, Lepra’s Chief Executive, Geoff Prescott signed a Memorandum of Understanding with Kate Macpherson, Secretary of John Bradburne Memorial Society (JBMS) in order to collaborate on leprosy work in Zimbabwe. The Memorandum is focused on helping those affected by leprosy in the Mutemwa Leprosy Care Centre in Zimbabwe and in using this centre as a model for the southern African Region.

The Memorandum of Understanding will allow Lepra and JBMS to develop the Mutemwa Leprosy Care Centre as a model for best practice in the treatment and care of people affected by leprosy. The aim will be to raise the profile of leprosy in Zimbabwe and neighbouring countries and to help train health workers from the region in the diagnosis and treatment of the disease.

John Bradburne, an English Franciscan Friar, arrived in Zimbabwe in the 1960’s, eager to help people affected by leprosy. His life in Mutemwa was far from easy, with his every activity centred on gathering food, clothing and medicine for leprosy patients, often going without these necessities himself.

Father Alfred Patience Tigere, the current administrator for Mutemwa Leprosy Care Centre, says that life for leprosy patients prior to the arrival of John Bradburne was bleak. John Bradburne was so devoted to leprosy patients in Zimbabwe, that after visiting the Mutemwa leprosy colony in the

Paul Watson and Father Alfred Patience Tigere

Lepra first got involved with the Mutemwa Leprosy Care Centre in 2018, with our Director of Programmes, Paul Watson, visiting

the centre in June 2019. His visit was followed in August by two leprosy specialists from Lepra India, Mr. A. Kameswaro Rao and Mr. Santosh Kumar Singh, who trained those affected by leprosy and staff in the ‘self-care’ of their affected limbs and took measurements for the provision of specialist footwear.

Father Alfred said, “The Lepra staff came for two weeks and it was beautiful. They knew so much about how to care for those affected by leprosy. They also identified people from the local community who, in future, may be trained by Lepra to make the special shoes.”

Lepra is committed to helping JBMS care for people affected by leprosy in its centre at Mutemwa and to support the Government of Zimbabwe in tackling the number of leprosy cases in the country. It is hoped that through Lepra’s intervention, the Mutemwa Leprosy Care Centre will become a beacon of knowledge for health professionals in Zimbabwe and wider southern Africa, so that leprosy may be rendered a disease of no consequence - identified and treated early, before any disability has arisen.

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LepraNews

Fundraising stories

Winter 2019

Take up a challenge for Lepra!

Please visit our website

School fundraising Brighton College raised a massive £2,371 for Lepra.

The pupils at Brighton College worked incredibly hard at their fundraising! Our top three fundraisers from Brighton College were George who raised £180 doing a 2km swim, Oliver and Arai who held a music practice marathon over the course of a day and raised £150 and Poppy who raised £146 creating homemade gift cards and selling them! A big thank you to all the students at Brighton College and we cannot wait to see what ideas you come up with next year!

The girls from Brighton Girl’s School raised an impressive £1,000 for those affected by leprosy. Pupils held bake sales, created sweet bags to sell and two pupils even ate only yellow foods for an entire day! We love to see such creative ways to fundraise. A huge congratulations to all the pupils and staff, especially Thea who raised £143 during her brownie-baking marathon.

At Glendale Academy International School in Hyderabad, Lepra India had a stall during the school’s science fair, explaining the work we do and ways in which the students and their families can get involved. A big thank you to Glendale Academy and their students and staff for their generous donation!

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Zumbathon In October, Lepra collaborated with Anna Kennedy Online to create a Zumba Challenge, for two great causes, leprosy and autism. It was a great success, raising money for those affected by leprosy and getting everyone in Croydon pumped! Lepra also held a bake sale at the event, with some much needed treats after an intense workout.

They raised a wonderful £261 for Lepra! We would like to congratulate everyone involved in the organising of the Zumbathon, especially our partner for the event, Anna Kennedy Online. It was a fun filled day and thank you to everyone that made it special by donating or getting involved!

www.lepra.org.uk/events or contact our Events Team on

01206 216700 £1 from you, we get two Thank you! Our ‘£1 from you, we get two’ appeal kicked off in September and finished on the 28th of October. It was another amazing success and we raised just over £34,500 in pledge money and £38,500 in appeal donations, giving us a fantastic total of £73,000. Our Ambassador, Stuart Miles, helped us raise awareness for the appeal, focusing on our Mental Motivators and the work they do. Our Mental Motivator’s pilot project in Bangladesh can now be rolled out across Bangladesh and India helping more people in desperate need. This vital service has improved the lives of almost 10,000 families in Bangladesh. Mental health is often an overlooked part of leprosy and we are fighting hard to make sure people get the care they need.

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Lepra does Strictly Come Dancing Practice for Lepra’s Strictly Come Dancing Event is well under way! At the end of this month, Lepra will be hosting a fun filled night of dance and laughter for a great cause. The event will be held in the Regency Dance Centre in Sutton-in-Ashfield and it promises to be a wonderful evening. Participants have been practicing hard over the past few weeks and it is proving to be a great way to meet new people, get fit and raise money for those affected by leprosy. Huge thanks to Andrew at the Regency Dance Centre and our fundraiser Angela for coordinating this fantastic event.

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Lepra does Glastonbury

Upcoming events Your Present, Their Future As we approach Christmas and the New Year, we are asking you to keep Lepra in your thoughts over the festive period. Your Present, Their Future presents you with the opportunity to donate your special occasion to Lepra. Instead of a Secret Santa, how about dedicating your office Christmas to changing lives? Or, why not dedicate your New Year’s Eve party to helping those affected by leprosy?

Sharing your special moments this festive season could mean the world of difference to someone battling leprosy in India, Mozambique, Bangladesh or Zimbabwe. Your donation could help us to find, diagnose and treat someone with leprosy. You can donate via Facebook fundraiser, or by donating directly to Lepra on our website: www.lepra.org.uk/donate

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World Leprosy Day 2020 World Leprosy Day is on Sunday the 26th of January and we will be marking the day with some exciting events to raise awareness of leprosy.

Two faith events will be taking place, the first at Ripon Cathedral on the 26th of January during Evensong, and the second at the House of Lords on 28th of January. The event at the House of Lords is an exciting, invitation only event that aims to highlight our ongoing work with our Mental Motivator’s pilot project in Bangladesh and the ways in which we help those affected by leprosy. We will have a host of interesting speakers at the event, including our vice president, His Royal Highness the Duke of Gloucester.

Our team of volunteers will be attending Glastonbury, the internationally renowned music festival in Somerset in June 2020. Lepra has been chosen as one of the charities involved with the Recycling and Litter Picking Team for the festivals 50th birthday. Festivals are a great place to meet people, have fun and get involved in helping us to beat leprosy.

We are delighted to be offering volunteer places at Glastonbury 2020, please visit our website to find out more: www.lepra.org.uk/festival-volunteers

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Cycle for leprosy On the 13th of June, Lepra is hosting the much-loved Edinburgh to St Andrews Cycle Ride.

This action packed charity ride gives you the opportunity to cycle a beautiful 68-mile track – all while raising money for a great cause!

Professionals, novices, families and those looking for a new challenge will enjoy this annual event! Tickets for the ride are the perfect Christmas gift!

Check out our website for more info and make sure to register your interest and pre order your tickets now! Visit: www.lepra.org.uk/events

We are hosting a ‘Walk for Leprosy’ on World Leprosy Day, in conjunction with our colleagues and supporters in India. We encourage you all to get your walking shoes on and get involved! Keep an eye on our website for more information! www.lepra.org.uk/events

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LepraNews

Winter 2019

Vikash’s story

JM Finn event Lepra was pleased to co-host an evening with Hamish Mc Rae in JM Finn’s London offices. The event was a great success, with Hamish McRae discussing his thoughts on a post-Brexit Britain. We would like to say a big thank you to JM Finn for holding the event and a sincere thank you to Hamish McRae for giving such an insightful and interesting talk.

At twelve years old, Vikash was diagnosed with leprosy by one of Lepra’s mobile care units, which travel to remote, isolated regions to find undiagnosed cases of leprosy. He had developed paralysis along his right hand and arm, which was a strong indication of multibacillary leprosy.

Prior to his diagnosis, Vikash was initially misdiagnosed with a general skin condition, with the cost of a private doctor in the region of 5,000 rupees (£55) for incorrect treatment. Coming from a low-income family, this fee affected Vikash’s family considerably.

When Vikash was finally diagnosed with leprosy, his classmates taunted him and he suffered prejudice. He was forced to leave school as a result of this.

Doctors at Lepra examined him at the Sparsh centre in Jharkhand, where they discovered several more numb patches across his forehead. He was given multi drug therapy (MDT) to cure his leprosy and

counselling while at the Sparsh centre, helping to improve his mental wellbeing.

After six months of MDT, Vikash was completely cured and eager to return to school. Due to his misdiagnosis and delay in his treatment, Vikash needed extensive reconstructive surgery to improve the movement in his hand and arm.

In conjunction with the Sparsh centre, Lepra successfully referred Vikash for an operation on his hand, which was causing distress and pain. He was given post-operative physiotherapy, which restored full use of his hand and he was allowed to return home.

Vikash was able to return to school shortly after his treatment and hopes to become a teacher one day. He said, “Lepra not only treated and corrected my hand but they changed my life”.

To find out more about our upcoming events, visit our website: www.lepra.org.uk/events

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)