Lepra's centenary brochure

The Road to 2030

www.lepra.org.uk Photography by Tom Bradley

Her late Majesty Queen Elizabeth II was Patron of Lepra Vice President: His Royal Highness The Duke of Gloucester KG GCVO

LepraNews

Vice-President

The Duke of Gloucester KG GCVO

Trustees

Mrs S McCarthy (Chair) Mrs S Bhasin Ms K Bigmore Mrs K Crabtree Mr D Dhamija Prof. R Hay Mr N Patel Mr N Raynaud Mr S Sharma Mr L Thomas Dr S Walker Prof. D Lockwood (retired 27th September 2022)

Our Ambassadors Charles Bland Tom Barton Fiona Duby OBE Victoria Hislop Stuart Miles Stuart Paver

Chief Executive Mr J Innes

OUR VISION

A world free from prejudice and disability due to leprosy.

OUR MISSION

Led by evidence, we work with people affected by leprosy, particularly the neglected, reducing transmission and promoting well-being.

OUR VALUES

One Lepra: People-centred, evidence-led, inclusive, respectful, caring, accountable, effective and innovative.

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2024 LepraNews

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A Time for Change

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epra’s story began in 1923, when Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new association with the aim of highlighting the impact of leprosy within the Commonwealth.

Leprosy remains a widely forgotten and deeply misunderstood disease and Lepra’s long-standing support from the Royal family has helped us keep leprosy in the public’s collective consciousness.

Her Late Majesty The Queen became Lepra’s patron following her succession to the throne on 6 February, 1952. She followed in the footsteps of her father, King George VI who was patron BELRA.

On 31 January 1924, the British Empire Leprosy The Queen’s deep empathy for people affected by Relief Association (BELRA) was officially founded leprosy, as demonstrated throughout numerous

by Rogers and Oldrieve, with the financial help visits to our programmes, centres and fundraising of Sir Frank Carter, a Calcutta businessman and events, has played a key role in philanthropist. BELRA was At the inaugural meeting of BELRA, held at breaking down the barriers of inaugurated by the Prince Mansion House in London on 31st January prejudice and discrimination. of Wales (later King Edward 1924, a message from H.R.H. The Prince of VIII) at Mansion House in Wales (Edward VIII) was read out: Lepra’s founding principles London. remain true in 2024. We “The elimination of leprosy from the British continue to take a pioneering, Conceived as a medical Empire is a wonderful ideal alike for British organisation, Lepra Medical Science and for British Administration. person-centred approach, spearheaded outpatient His Royal Highness is confident that this ideal advocating for early case can be realised if the Association is accorded detection, building and work instead of following the support it merits”. strengthening community-led the traditional method of healthcare, fighting leprosycompulsory segregation. related discrimination and providing a voice for From his experience, it was clear to Rogers that it was important to treat leprosy in its earliest stages, some of the world’s most vulnerable people; those who are still experiencing the physical, social, and that the segregation system reinforced social economic and emotional impact of leprosy and LF. prejudice, causing people to hide their diagnosis, which often led to further complications and significant disabilities.

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Our Key Moments 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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A global partnership

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hroughout our 100 year history, we have worked with some of the most profoundly affected communities across the world. We have operated in countries such as Nigeria, Malawi, Zimbabwe, Mozambique, Brazil, Kenya, Sierra Leone, Uganda, and Zanzibar.

In more recent years, we have focused our efforts in the most endemic areas of India and Bangladesh, where we know we can have the greatest impact. We continue to work closely in partnership with the International Federation of Anti-Leprosy Associations (ILEP), a global network of NGOs committed to tackling leprosy and NTDs across the world.

India 2022-2023

Our projects and programmes are evidence-based and peoplecentred. We work alongside affected communities to facilitate free and accessible healthcare. Our approach is to advocate on a national and local level for the communities we support, and to strengthen local health systems to provide sustainable healthcare for communities with the greatest level of need.

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or Lepra to have the maximum impact in the work we do, it’s vital we have the support of a range of corporate partnerships, who share our vision of sustainable, community-based healthcare.

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In recent years we have formed a close partnership with leading footwear brand Pavers, who have funded a fleet of innovative mobile footwear units, which have revolutionised the provision of this vital service for remote communities in India.

In 2014 Stuart Paver from Pavers supported the launch of the first mobile shoe van in Bihar, and then supported the launch of the Andhra Pradesh van in 2019. Since then, the project has directly helped 2700 people who have either leprosy or lymphatic filariasis and has reached nearly 10,000 people in rural areas of India.

As we look towards the future, we are keen to develop further corporate partners to help us launch new ambitious projects and continue our research into even more effective treatments and support services for some of the world’s most vulnerable people.

Bangladesh 2022-2023

To learn more about our work in India and Bangladesh, and how you can help support our cause, please visit:

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

2030 LepraNews

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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 a rich tapestry of history and reflect on all of our many achievements throughout the years.

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.

“Working towards a world where we are 2024 is also a time for us to needed no more” take stock of where we are

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.

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.

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 people who are affected by leprosy and LF. 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.

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.

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.

And as we celebrate our 100-year 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.

Every person affected by leprosy or LF has unique needs for care and support.

Every person has unique pathways to full inclusion in society.

Mr. Rayala Brahmam and Jimmy Innes

LepraUK

LepraUK

LepraUK

Lepra

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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