Lepra News Spring 2024

ISSN 2756-1461

CENTENARY SPECIAL EDITION

100 YEARS O U R PAST - O UR PEOPLE - OUR FUTU RE

Our Centenary News and Events

International Women’s Day

www.lepra.org.uk Her late Majesty Queen Elizabeth II was Patron of Lepra Vice President: His Royal Highness The Duke of Gloucester KG GCVO Photography by Tom Bradley

The road to 2030 Our future vision

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The Road to 2030

By Jimmy Innes Lepra Chief Executive

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s Lepra turns 100 years old, it is a time for us to celebrate and look back on the rich tapestry of our history and reflect on all our many achievements over the years.

2024 is also a time for us to take stock of where we are going as well as where we have come from.

We are looking ahead to what more we can do as an organisation to accelerate progress and support for people who are affected by leprosy and LF.

“Working towards a world where we are needed no more”

From our inception in 1924, through our early decades as the British Empire Leprosy Relief Association (BELRA), to our work supporting trials for the first drug to successfully cure leprosy, to our renaming as Lepra, and across the years to now: here in 2024.

So in the year we celebrate a centenary, we are also launching a strategy; one that charts our priorities and directions for the next six years. Our strategy is ambitious: We have more to offer.

A centenary is no small thing. For me, as the Lepra UK CEO, I am proud and privileged to stand on the shoulders of all those who have gone before and who built the organisation that I am part of today.

Whilst I am but a blip on the Lepra clock of time, it is my honour to be leading the organisation at this momentous time in our history.

One thing that I am immensely proud of about Lepra is our focus on the needs of the individual. It is one of our strongest values.

Leprosy and lymphatic filariasis (LF) are not just about numbers, cases and statistics, of course: they are mainly about people. Every person affected by leprosy or LF has unique needs for care and support. Every person has unique pathways to full inclusion in society.

And as we rightly celebrate this moment in time, we are also acutely aware of how much more needs to be done for people affected by leprosy and LF. Leprosy still exists. LF still exists. Whilst the world has set targets to eliminate them both in the coming years, we know that global elimination is something that is beyond our direct control.

We know that we still have our work cut out for us. It is time for increased action, for us to do all we can to build on the achievements of the past and strive further to realise our vision of a world free from disability and prejudice due to leprosy and LF. And as we celebrate our 100year anniversary, we know that we would be doing something wrong if Lepra was still around for anything like 100 more.

We look ahead with clarity of purpose, working towards a world where we are needed no more.

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Manikyamma - Speaking at our University of Essex event for International Women’s Day in March

2024 LepraNews

The Westminster Mass

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By Laurice Jarman Faith Partnerships Assistant Manager

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ith a near perfect cloudless blue sky and the sun shining brightly across London on the afternoon of Friday 26th January, staff, Trustees, new and long-term supporters gathered at Westminster Cathedral for a Holy Mass to celebrate the 100th Anniversary of Lepra.

People had travelled the length and breadth of the country to attend the service and familiar faces greeted each other, whilst new faces introduced themselves, as we came together to share in the history of Lepra and people affected by leprosy, a cause close to all our hearts.

In his Homily, Bishop Declan outlined the history of Lepra and how far we have come as an organisation, from new and innovative healthcare programmes to advocating for those without a voice and always putting the needs of those we help at the heart of everything we do.

After the service, I met with many of our long-term supporters and heard their interesting and varied stories as to how they came to support Lepra for so many years. Stories from people who have witnessed leprosy first hand almost always tell of the uplifting joy and happiness that people have, once cured and having been supported with counselling throughout their treatment.

“It was a wonderfully For many years Lepra has moving service” received invaluable support

The service was conducted by Bishop Declan Lang who had travelled to London from the Clifton Diocese in Bristol and Father Mike Maguire, Cathedral Precentor.

It was a wonderfully moving service with the choice of music, readings and prayers especially chosen for their relevance to those affected by the disease of leprosy and the work of Lepra over the past 100 years, as we begin to celebrate our centenary year.

Our CEO, Jimmy Innes spoke of the present day and of his travels across India and Bangladesh. He spoke of his personal encounter with people who are overcoming great adversity due to a positive diagnosis of leprosy, and that with care and support they are able to live their lives with dignity and have a brighter future, full of hope.

from individuals of Faith and whole Faith communities as they come together with united generosity. This has enabled Lepra to continue to find, diagnose, treat and support people with the disease of leprosy that many people still to this day, do not realise still exists.

As we look to the future we give thanks for the love, compassion and humanity that our Faith supporters demonstrate as they stand with us to help improve the lives of some of the most vulnerable communities affected by leprosy.

A Lepra Family: Laurice with her Daughter Dr Georgee Jarman

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A ‘House of Commons Welcome’ A Centenary Launch

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n 31 January 2024, Lepra formally marked There were several guest speakers throughout the event including Will Quince MP, Lepra’s Chair the launch of our centenary year at the of Trustees Suzanne McCarthy, Lepra historian House of Commons.

Hosted by Colchester MP the Rt Hon. Will Quince, our esteemed guests joined us to recognise this important milestone, and to look to the future of the organisation as we set a new course for the journey ahead. It was also an opportunity to ‘shine a light on leprosy’, to raise awareness for World Leprosy Day, with new and existing friends and partners.

Irene Allen and Chief Executive Jimmy Innes. The event was reflective, celebrating Lepra’s unique contributions to innovative healthcare over it’s 100 year history, but also hopeful with the introduction of an ambitious new strategy for the coming 6 years, which was preluded by Jimmy’s speech.

Speaking after the event Lepra Trustee Nayan Patel MPHF explained: “This centenary year we celebrate the impact Lepra has been able to make, in transforming the lives and livelihood of those in the greatest need.

We also acknowledge the extraordinary generosity of all those who have supported us and to say a big thank you to our hard-working staff who have dedicated their time, skills and knowledge in addressing challenges of one of the world’s oldest, most highly stigmatised and discriminated neglected diseases.

Lepra’s approach to partnership working, brings together an alliance of philanthropists, business leaders, influential people and organisations who share our mission and values. With their support, we can help to fund new and innovative approaches to treatments, research programmes and community-based healthcare.

Leprosy is curable and preventable, but our fight doesn’t stop until it is eliminated. Together we can make a difference and beat leprosy.”

To find out more about the centenary launch event and to hear the speeches from the evening, please visit:

www.lepra.org.uk/centenary

From left to right: Prof Daulat Singh Chauhan (ATM University, India), Himanshu Jain DL (Rotary International District, Prof Sabu Padmadas (University of Southampton), Baroness Verma (House of Lords), Nayan Patel MPHF, Rosemary and Samuel East ( The Gengulphus Fund) and Lepra’s Angela Stafford.

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Our Digital Celebration Lepra’s New Online Exhibition

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e are pleased to announce the launch of Lepra’s new centenary website, which also serves as a digital exhibition, celebrating our past, our people and looking foward to the future of our cause.

Discover our rich history with our archive of film, photography, and media.

Explore our digital timeline documenting historic moments throughout the past 100 years, view copies of Lepra News dating back to 1970, and read historian Irene Allen’s article reflecting on the charity’s milestones.

When our centenary year has passed, the website will remain as an important digital resource educating on and preserving our history for years to come.

If you have any images, film, stories, or articles you wish to contribute to our centenary website, please do get in touch:

comms@lepra.org.uk

Meet the people who have shaped our history; pioneers in research, trustees who lead us, ambassadors who champion our cause, and supporters whose contributions we are eternally grateful for.

Learn about our celebratory events and discover how our new global strategy will aid our future aims.

A special thank you to our young volunteer Molly, age 14 years, who digitised over 50 years of Lepra News for our digital archive!

The Future of Leprosy Review

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ublished by Lepra, Leprosy Review is an open access peer reviewed journal including original papers on all aspects of leprosy.

The journal’s proud history dates to 1928 when it began as an information booklet, Leprosy Notes, for the British Empire Leprosy Relief Association (BELRA). The title of Leprosy Review was first used in 1930 – the word “Empire” appearing last in April 1957. The journal has been published quarterly since, without interruption, and is now the only peer-reviewed English language leprosy journal.

Advances in technology have allowed us to transition Leprosy Review to an online publication – a move which enables us to reach a global audience across multimedia whilst strengthening our commitment to sustainability and reducing costs.

To sign up to receive new publication alerts, and read Leprosy Review for free, please visit:

www.leprosyreview.org

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Our Key Moments 100 years of research and innovation

The first issue of ‘Leprosy Notes’ was printed in 1928, a free to access scientific journal, aiming to share research and findings from field workers across the world. The title of Leprosy Review was first used in 1930.

1924

1928

Lepra was founded in 1924, originally as BELRA, by Sir Leonard Rogers, Reverend Frank Oldrieve and Sir Frank Carter.

1936

In 1945, Dr Robert Cochrane began studies with sulfone derivatives, and was the first to use dapsone in the treatment of leprosy, laying the groundwork for treatments still used today.

1945

In 1936, BELRA launched its ‘Child Adoption Scheme’, whereby supporters in the UK and elsewhere provided direct financial assistance for support and treatment. The Royal Family supported the scheme, including our then future patron Her Late Majesty Queen Elizabeth II.

1953

In 1964 the changed its BELRA to L reflect an un of the chang Shortly afte the High Co for Malawi a President, V Boyd, appro agreement Malawi Pilot Control pro subsequent work.

In 1959, BELRA produced the first made to measure shoes to protect ulcerated feet and since that time footwear has been a critical part of our work.

1959

In 1953, BELRA established the first dedicated leprosy research centre in East Africa. The first Director of the East Africa Leprosy Research Centre was an Australian doctor called Dr. James Ross Ines.

1961

1964

In 1961 BELRA helped to develop Clofazimine (B663). The East Africa Leprosy Research Centre played a key role in the trials of B663, which to this day remains a part of the multidrug therapy used for treating leprosy.

organisation s name from LEPRA to nderstanding ging times er this, In 1965 ommissioner and LEPRA’s Viscount oved an on the t Leprosy oject, which tly began

1975

On 3 August 1989, Lepra’s sister organisation ‘The LEPRA Society of India’ (LEPRA India) held its inaugural meeting in Hyderabad. LEPRA India has extensive reach throughout the country, and their organisational independence provides a unique ability to help support the Indian government’s National Leprosy Eradication Programme (NLEP).

1989

In 1975, Lepra became one of the first organisations to implement the use of multidrug therapy (MDT). It is estimated that more than 16 million people have been treated with MDT over the past 40 years.

1999

In 2005, author and long-term Lepra supporter Victoria Hislop, released the award winning novel ‘The Island’, which helped to shine a new light on this ancient disease. Now a Lepra Ambassador, Victoria has since released ‘One August Night’ and the children’s book ‘ Maria’s Island’, which have helped bring awareness of leprosy to new generations of children and adults.

2005

Following the Blue Peter Lepra appeal in 1996 which raised £2.8 million, the Blue Peter Health and Research Centre (BPHRC) was officially opened on December 14th 1999.

Providing vital leprosy, TB and HIV research, to find more effective treatments, and ways to prevent disabilities.

2015

In 2019 Lepra Trustee and Emeritus Professor Diana Lockwood travelled to India with documentary photographer Tom Bradley to create a thought-provoking series of portraits and real-life stories which challenge the myth and misconceptions surrounding leprosy.

In the spring of 2023, Diana and Tom took the project to Bangladesh, to find real-life stories of people affected by leprosy in a postpandemic landscape.

2019

In 2015, Pavers funded our first mobile footwear unit, which travels across isolated areas of India, producing and delivering custommade footwear, helping to prevent injury and disability for people affected by leprosy and lymphatic filariasis (LF).

2024

During Lepra’s centenary year in 2024, an ambitious new strategy will be launched to help the organisation provide an even greater contribution toward the WHO 2030 global leprosy strategy.

Lepra’s 100 years of research and innovative programme design, will continue to provide the very best in evidenceled, person-centred and holistic healthcare to some of the world’s most vulnerable communities.

To learn more about Lepra’s history and how our innovative approach to healthcare helps to improve the lives of thousands of vulnerable people every year, please visit:

www.lepra.org.uk/centenary

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International Women’s Day Join us in-person or virtually

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e would be delighted if you could join us for this fascinating event which is part of Lepra’s centenary year and the University of Essex’s 60th anniversary celebrations.

and hard work, they have turned their lives around.

Maria del Mar Marais and Mowmita Basak, Lepra’s programme managers, will share how they work directly with teams in India and Bangladesh to bring about lasting change in communities affected by leprosy.

In 2022 we launched our partnership, which enables us to collaborate on projects and academic The short presentations will be followed by a panel research where we share common interests, to discussion featuring colleagues from the University advance the fields of public and global health. of Essex and will offer an opportunity for the audience to ask questions.

Celebrated around the world, International One of our panellists will be Women’s Day recognises women’s achievements Dr Kamrun Koly, without regard to a researcher from divisions, whether Bangladesh, who national, ethnic, was awarded a linguistic, cultural, Human Rights economic, or Centre Scholarship. political.

In partnership with Lepra, Kamrun is We work with conducting doctoral people affected research on human by leprosy and rights issues around lymphatic filariasis neglected tropical (LF) in India and diseases, which Bangladesh, includes gender. supporting the Her findings will physical, social be embedded in and economic Lepra’s Bangladesh impact of the programmes. diseases. We hope that by sharing the experiences of women affected by leprosy, and from those involved in research, treatment and in communities, To find out more about this special event, or that you will be inspired to understand more about to register to join us in-person, or virtually, please head to our webpage, or scan the QR this neglected disease.

code below. You can also email the university

World-leading leprologist Emeritus Professor Diana directly at events@essex.ac.uk.

Lockwood, who has devoted her career to research and treating people with leprosy, will open the www.lepra.org.uk/events event and talk about her work and achievements.

Manikyamma from India and Maksuda from Bangladesh will speak about how leprosy adversely affects women and how, through their resilience

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Radkika Mamidi

Lepra Society’s Inspirational State Co-ordinator

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epra’s centenary celebrations, provide an excellent opportunity to meet the people behind our innovative research projects in India and Bangladesh. People like Radhika Mamidi Radhika works as a state co-ordinator for Lepra in the regions of Andra, Pradesh, Telangana and Maharashtra.

With a master’s degree in social work, and human resources management, she is passionate about serving communities and people in need.

Radhika first became aware of Lepra whilst working for a partner organisation.

“We collaborated with Lepra on several community intervention programmes, and I began researching their work. I was enthusiastic to work for the cause and joined Lepra in 2008.”

Radhika is currently responsible for a holistic project focusing on leprosy, lymphatic filariasis (LF), and HIV. The programme aims to meet the needs of the community in terms of health, social, psychological, and economical aspects.

For Radhika’s team, continuum of care is paramount.

“From treatment initiation to rehabilitation, we focus on improving the lives of the persons with whom we work. We also strengthen the capacity of existing community-based organisations enabling them to advocate for their rights and to raise their voice.”

Radhika believes the forums play a vital role in raising awareness of leprosy and LF and in turn addressing the need for support. It is achievements like this that have the most impact for the people Radhika supports.

“The difference that we make to people’s lives and the smiles on their faces at the end of the intervention makes us proud.

When we see the spectrum of continuum of care from treatment initiation to rehabilitation - it is very significant when we see an improvement in their quality of life, like the child who became a drop-out going back to school to continue their education and a person receiving multidrug therapy completing his treatment and going back to work.

Most of the other organisations look to us as a model for our working systems which makes us very proud in our domain of work in neglected tropical diseases.”

Radhika believes that new technology is key to benefiting the lives of people affected by leprosy. One such successful technological intervention is the Kobo app, a digital footwear measurement tool. Rather than collecting rough measurements on paper, feet are scanned to produce accurate data recorded on a mobile app that can be sent immediately for production.

“Collecting on paper is very difficult for the data managers to compile and analyse the data so utilising this Kobo technology enables us to validate, consolidate and analyse the data.

We want to scale up the use of the Kobo app and adapt further digital technologies to our interventions.”

Recent key successes of district forums include advocating for pension rights of people affected by To find out more about lymphoedema and lymphatic filariasis.

Lepra’s incredible researchers, “The government is now issuing 5,000 rupees per month for people affected by lymphoedema and LF which will greatly improve their lives.”

supporters, volunteers and the work which they enable, please scan the QR code:

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A Step Forward

The future of footwear and ulcer prevention

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hroughout 2024, Lepra is piloting an innovative footwear study focussing on ulcer prevention and investigating how digital technology can improve the effectiveness of customised protective footwear for people affected by leprosy and LF.

The facts Ulcers are common among people affected by sensation loss due to leprosy. One of the contributing factors is uneven foot pressure.

When walking, high pressure is exerted in areas of the feet, which can cause repetitive stress and damage, resulting in ulcers. If left untreated, or if there is continuous stress on one foot, ulcers can lead to further damage, infections and permanent disability. Having custom-made footwear takes the pressure off such areas and restores balance. It also helps to reduce the occurrence of ulcers and speeds up healing of existing wounds. This in turn allows people to quickly return to their daily lives, and an improvement in well-being.

What are we doing?

Lepra’s India team wanted to investigate if baropedometry could further increase the effectiveness of our footwear in reducing ulcers and disability.

Barpedometry uses new technologies to allow our foot technicians to create an accurate picture of weight distribution using pressure plates.

Lepra’s Blue Peter Public Health and Research Centre in Hyderabad, Lepra UK and highly experienced Lepra teams working within Indian communities are conducting a study with funding from the Leprosy Research Initiative (LRI).

Working with 36 self-support groups across three states in India, 50% of attendees are randomly selected to have their footprints taken on location, and then digitally enhanced at Lepra Referral Centre where customised shoes are being handcrafted by trained shoe technicians.

The entire process, from footwear measurements being taken to delivering the customised footwear to participants takes a maximum of 10 days. The remaining study participants are issued with our traditionally made custom footwear, which is also delivered within 10 days. Wound care training is also being provided to all 36 self-support groups and local government health care centres. Their skills will be assessed, and ongoing support provided.

The aim After nine months, a comparative assessment will investigate which type of footwear was more successful at preventing foot ulcers and/or led to faster healing of existing ulcers.

The hope is that new technological approaches such as this, will not only improve rates of recovery from injury, but will actually help prevent injuries and ulcers from developing in the first instance.

To find out more about our research projects and innovative approch to healthcare, please visit:

www.lepra.org.uk/what-we-do

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Calling All Schools!

Our search for centenary heroes has begun!

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his year Lepra celebrates its 100th anniversary and we want to take this opportunity to say a huge THANK YOU to schools that have supported us over the years.

Our records show that throughout the past century over 2,354 schools have supported our cause so far, raising an astonishing total of £10,029,994! We will be forever in awe of the hard work of pupils, teachers and families who have fund-raised for Lepra.

Celebrating schools’ achievements

Any pupil who raises £100 or more will be awarded the title of a ‘Lepra Centenary Hero’ and receive a personalised certificate, a Lepra badge and highlighter pen.

We can support you by providing a personalised virtual assembly talk, JustGiving page, parent letter, tutorial resources, sponsorship envelopes and more.

How your fundraising will help

To celebrate, we have dug into our Lepra News’ archives and discovered some fascinating articles on schools’ amazing achievements.

92p in every pound donated, goes directly to funding our research, treatment and advocacy services. The remaining 8p helps us raise the next pound!

Your school can become a ‘Lepra Centenary School Sensation’ by raising £1,000. You will receive a digital badge, a certificate and a personalised thank you card from our CEO, along with a mention on our website and newsletter.

£1000 will provide an incredible 20 self-care training sessions for over 200 people affected by leprosy, offering vital information on caring for ulcers to help prevent further complications and disabilities.

New Centenary Fundraising Ideas!

Silly Shoesday

Bake it Happen!

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This isn’t just about silly shoes or socks, it’s a celebration of individuality and the joy of stepping out of the ordinary for a good cause.

Get ready to ‘Bake It Happen’ and sweeten the deal for Lepra’s 100-year anniversary! Join us for a scrumptious fundraising bake sale that promises to satisfy your cravings and make a positive impact in the lives of thousands of vulnerable people affected by leprosy and LF.

et ready to showcase your wild and wacky footwear creations in celebration of a century of Lepra’s mission to end the impact of leprosy.

Whether you’re rocking your favourite colourful socks with sandals, odd shoes and socks, furry slides, or just something downright eccentric every shoe or funny sock tells a story.

Let’s donate 100 shoes, one for every year of Lepra’s active work! £6 will purchase a pair of protective footwear, enabling a child affected by leprosy to walk to school without further injury or infection.

et’s turn the joy of baking into an opportunity to end leprosy together.

Every cookie, cake, and pastry purchased contributes to Lepra’s vision of a world free from the prejudice and disability associated with leprosy and lymphatic filariasis (LF).

‘Bake It Happen’ isn’t just about the delicious goodies; it’s about baking a brighter future for thousands in India and Bangladesh, as £100 will enable a school education programme to reach over 1,000 pupils helping them to identify the symptoms of leprosy.

Email Maria: mariav@lepra.org.uk to get involved!

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Supercharge Your Donations!

Boost your donations by 25% at no cost to you!

Gift Aid helps charities claim an extra 25p for every pound donated. The money comes from the taxes you have already paid.

Gift Aid is a way to supercharge all your donations by 25% without any extra cost to you! Gift Aid is a government scheme which allows charities like us to claim an extra 25p for every £1 we receive.

How do I sign up for Gift Aid? Please complete our online Gift Aid form or print our Gift Aid declaration form and send back via email to finance@lepra.org. uk or by post to Lepra, 28 Middleborough, Colchester, Essex CO1 1TG.

Last year Lepra was able to claim close to £90,000 from the government Gift Aid scheme.

This does not cost you anything, as we claim this money from the government, and we receive it from the taxes you’ve paid already.

This means that for no extra cost, you can make your contribution to our efforts at beating leprosy an astounding 25% stronger!

Who can gift aid?

There are not many restrictions to boosting your donations through gift aid, you just have to: •

Be a UK taxpayer.

•

Donate the money that belongs to you, not a company, foundation etc.

•

Ensure that the tax that you pay each year is at least equal to all your generous contributions to any charity for that tax year.

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Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG 01206 216 700 - www.lepra.org.uk - lepra@lepra.org.uk Registered charity number: 00213251 (England and Wales) SCO39715 (Scotland)

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