LEPRA begins LF project in Bangladesh. LEPRA has recently begun work in five districts of Bangladesh to improve awareness of lymphatic filariasis (LF). This disfiguring disease is caused by a parasitic worm transmitted to humans by mosquitoes and causes major deformity to limbs and genitals. It is the second leading cause of disability in the world and the deformities caused by the disease are irreversible.
LEPRA is working with a partner in each of these five districts, where training on the disease will be provided through these partners to volunteers, local workers and leaders. Health education activities are being launched in these five areas, including visits to schools and colleges, film shows at villages and public gathering places, group meetings, distribution of leaflets and posters and through a short film to be broadcast on television.
Whilst there is currently no cure, medication is available which helps to break the transmission of the disease and eliminates the reservoir of parasitic worms. Communities will be informed of this through the health education activities, and will be encouraged to participate in the drug administration programme provided by the government health department of Bangladesh. 09/12/2004.
Brazilian Footwear project hailed a success. A LEPRA supported footwear workshop project in Brazil, which has trained people with disabilities to produce adapted footwear and other leather goods, has been hailed a huge success.
Over the course of 2004, the Sao Bernardo do Campo MORHAN Group (Movement for the Reintegration of Individuals Affected by Leprosy) produced leather and rubber goods such as sandals and orthopaedic shoes, as well as doing shoe repairs. The workshop also diversified over the same period, producing leather belts and purses. The project has two positive aspects in that it not only provides the trainees with an improved quality of life by helping them to support themselves but it also helps prevent and reduce further injury to those with disabling foot conditions.
The most exciting outcome of the project was that the workshop was able to develop good partnerships for the future. Beginning in 2005, the state government of Sao Paulo intend to purchase 200 pairs of the group's sandals, boots and adapted shoes for use by patients. The revenue from the sale of products means that the project is now self-sufficient, and their work & craftsmanship are beginning to gain recognition in the area for their high quality at a low cost. 09/12/2004.
New Chairman appointed for Medical Advisory Board. LEPRA is delighted to announce that Dr John Porter has been newly appointed as Chairman of LEPRA’s Medical Advisory Board.
Dr Porter has been a member of the Advisory Board since 1996 and is a Reader in International Health at the London School of Hygiene & Tropical Medicine. He trained in medicine at Kings College Hospital, London and specialised in paediatrics.
In 1984 he studied public health at the Harvard School of Public Health (MPH) and then trained in infectious disease epidemiology and control at the Center for Disease Control and Prevention in Atlanta, and the PHLS Communicable Disease Surveillance Centre in London. He has worked at the school since 1991.
Dr Porter’s research work includes the control of tuberculosis, the interaction between TB & HIV, health systems, conflict and health, and public health ethics. He has worked with LEPRA India on operation research relating to leprosy and tuberculosis. 09/11/2004.
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St Lazarus Promotion for LEPRA's CE. LEPRA's Chief Executive Terry Vasey received promotion to the rank of Knight of The Military and Hospitaller Order of Saint Lazarus of Jerusalem at a recent Investiture ceremony at the Temple Church in London. The service was held on 16th October 2004 and was conducted by His Royal Highness Prince Charles Philippe d'Orleans and the Archbishop of Canterbury, Dr. Rowan Williams. Terry, who was appointed as a Commander of the Order in 1998, said 'St Lazarus does wonderful work through the Charitable Trust and I took the opportunity to thank the Order for all the help it gives'. 09/11/2004. |
Update on new Surgical Unit in India. A new reconstructive surgery unit which will provide for over 100 operations each year at the Saint Joseph’s Leprosy Centre in Madhya Pradesh, is nearing completion.
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Building work is expected to be completed by the end of November, and vital medical equipment is now being purchased. The unit is expected to be operational from mid December 2004. The new surgical centre will enable reconstructive surgery to be performed for people who have deformities caused by leprosy. It will include in-patient beds, an operating theatre and other support services, and will be available to six districts in Madhya Pradesh covering a population of 1.5 million people. 09/11/2004. |
Programmes
review of 2004. During the year, WHO published statistics showing
that at the beginning of 2003, over 620,000 people had been found with
leprosy. Of these, over 473,658 or 76% lived in
LEPRA’s
income in 2003 rose to over £4.9m, an increase of around 10%. LEPRA has
been successful in attracting new and increased funding from institutional
donors such as the Community Fund (now known as the Big Lottery Fund),
the European Union and the
Country
Updates.
India. The responsibility
for the diagnosis and treatment of leprosy continues to be integrated
into the government health services and so for
Recent
monsoon flooding in July and August was widely reported and has had a
devastating impact on many of the communities where we work. Programme
Officer
LEPRA
has continued to support patient advocacy groups in Ceará with the implementation
of the MORHAN Social Rights Project co-funded by the Civil Society Challenge
Fund of the Department for International Development (DFID). The LEPRA
team in
Mozambique. A strategic review of our work
We
have ensured that through Jane Hippke, leprosy related rehabilitation
work continues to be promoted through the formulation of a centrally
based pilot prevention of disabilities programme, offering services and
training in those provinces requiring assistance. Once again this year
it is planned that Geisa Campos will be returning to
The
process of assessing the specific needs and potential for continued support
in
Angola. With increasing stability since the cessation of hostilities in
C
We continue to
support research into the treatment and management of leprosy patients,
and into other aspects of the biology of the disease. This is done through
the grant awards to scientists working in these areas and through the
work done at the LEPRA research facilities in
During
2004 some major research studies are drawing to an end and analysis has
begun on the accumulated data from studies on nerve function impairment;
a long-term study of ocular leprosy and a surgical nerve muscle grafting
technique. A three year research study on the molecular epidemiology
of leprosy continues to provide information regarding transmission. This
research could help to explain how leprosy is transmitted and why some
people are more likely to contract leprosy than others. Comparison between
the leprosy and tuberculosis bacilli is now possible through the sequencing
of their genomes. This will help in the future development of better,
more effective treatments of both diseases.
Snippets
The
British Government’s Civil Society Challenge Fund is planning to broaden
the scope of its funding criteria in ways which may help LEPRA to submit
proposals for some of its innovative service delivery work in
Dr. Patricia Rose retires from Medical Board. Dr. Patricia Rose, Clinical Consultant to LEPRA and a member of both its Medical Advisory Board and Executive Committee, has retired after a long, and illustrious career.
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Patricia trained at the Royal Free School of Medicine in London and passed her MRCS and LRCP in 1952. She worked in general hospitals in Guyana and Trinidad for the next ten years, and part-time for the government in St. Lucia. |
In 1969, while working with handicapped children, she was approached by the Prime Minister of Guyana to consider taking on patient care responsibilities at the country’s main leprosarium. She agreed on condition that the leprosy programme should be entirely domiciliary and that no-one should be compelled to live in the leprosarium, which should become a leprosy hospital maintained only for the care and support of the patients already living there. However, before assuming control of Guyana’s leprosy programme, Patricia had to undergo an intensive period of specialist training.
Early in 1970 she was back in Trinidad studying dermatology and leprosy as a prelude to attending the April Seminar on Leprosy at Carville in the USA, followed by five weeks intensive training at Carville. Afterwards Patricia spent time at the Leprosy Study Centre in the UK (now sadly closed).
By the autumn of 1970 Patricia had returned to Guyana to take on her new position at the head of the country’s leprosy control programme. It was this position that first brought her into contact with LEPRA, often describing how her projects benefited from LEPRA funding. She was also in close contact with Dr. Colin McDougall, who was then LEPRA’s Clinical Consultant, and succeeded him on his retirement in 1988.
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Patricia was always very interested in multi-drug therapy, and reactions caused by the body’s response to treatment. She was also actively engaged in LEPRA’s LEPTAMS (Leprosy Training in African Medical Schools) initiative. She published many papers on leprosy, and as LEPRA’s Clinical Consultant, travelled widely through India, Africa and South America, visiting projects and encouraging and monitoring staff. She was also an active referee of medical manuscripts for our own prestigious medical journal Leprosy Review. |
Patricia was married to the late Sir David Rose, CMG, Governor of Guyana and has six children. She has received many awards for her work: Silver medal of Guyana Medical Association in 1975 – awarded in honour of International Woman’s Year – one of only two medals struck; the Gold Medal of the Ministry of Health, Guyana in 1977; the award of the "Golden Arrow of Achievement" in the Guyana National Honours List of 1980, and the award of the "Caicique’s Crown of Honour" in the Guyana National Honours List of 1987.
We know that Patricia will never lose her interest in leprosy, but we wish her a very long, very happy retirement, and extend our most grateful thanks for all she has done for LEPRA and those with leprosy. 06/10/2004.
New Director for BPRC. A new Director has recently been appointed for the Blue Peter Research Centre (BPRC) at Hyderabad, India.
Dr (Lt. Col.) Shishir Gokhale took up the post of Laboratory Director for BPRC in mid-August. He is a specialist in pathology and microbiology, and has served in the Indian army for many years. He brings with him eighteen years of experience in organizing research programmes.
The Blue Peter Research Centre was established in 1999 with support from a Blue Peter appeal, and undertakes research in leprosy, TB & HIV/AIDS. We welcome Dr Gokhale to LEPRA and wish him well in his new role. 06/10/2004.
2004 Celebrity Book Auction Update. Our 2004 internet auction - known as ‘The Big Book Pledge’ - will be launched on 17th November 2004. The auction is being backed by two celebrities – Heather Mills McCartney & Kenneth Branagh, who were both very keen to support this appeal and help raise awareness of LEPRA.
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Signed
book kindly donated by singer/songwriter Phil Collins.
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We mailed around 900 celebrities asking them to sign and donate their favourite book to the appeal and have been very fortunate to receive many kind responses. These include books from such celebrities as Dame Shirley Bassey, Phil Tufnell, Kate Winslet, Stirling Moss, Ronnie Barker, Paul McCartney, Gordon Ramsay and many, many more. To see a full list of books donated so far please click here.
If you require any further information regarding the book auction please contact Lizzie Dearling on 01206 216725 or email lizzie_dearling@lepra.org.uk. 24/09/2004.
Monsoon floods hit Bangladesh. During July exceptionally heavy monsoon rains brought flooding chaos to large areas of Bangladesh and parts of north-eastern India. Areas where LEPRA works were seriously affected and many of the communities we help have suffered destruction of homes and over a thousand deaths by drowning, disease and snakebite. Roads were cut and rice crops destroyed. In Dhaka the capital city the sewerage system collapsed increasing the health risks particularly for the most vulnerable – women, children and the elderly.
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LEPRA staff and those of our partner organisations have been doing all they can to help those communities most seriously affected but with two thirds of the country under water and over one million people displaced, life is extremely difficult for everyone. LEPRA’s Field Representative Dr. Mujibur Rahman reported, " Many of the clinics and communities we support are not able to be reached and some areas are totally submerged. We are doing everything we can to support relief efforts and reach those most affected". Colchester based Programme Officer, Rokunuz Zaman was visiting the projects during the worst of the flooding. 10/08/2004. |
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LEPRA holds Lords reception. As part of LEPRA’s new corporate fundraising initiative the Fellowship programme, an evening reception was held at Lords Cricket Ground in July. The aim of the event was to promote the charity to a corporate audience and to ask companies to give regularly. Allie Hogsbjerg, LEPRA’s corporate fundraiser, gave a presentation on the work of LEPRA during which guests were given the chance to see what it was like to lose the use of their fingers through leprosy and experience how it would feel to live with TB.
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After the presentation, guests retired to enjoy a new form of cricket which is taking the UK by storm, Twenty/Twenty Cricket. This new form of the game has been created to make cricket more appealing to the general public. All-in-all, a very successful event was enjoyed by those who attended - moreso for Surrey supporters as the result of the match also went in their favour! |
For more information about the Fellowship Programme and details of the next event, please contact us on 08451 212121. 10/08/2004.
2004 Celebrity Book Auction. Over the last two years LEPRA has been very involved in the world of celebrity memorabilia! We have auctioned off hundreds of items, from Liz Hurley’s Versace shoes to David Jason’s ‘Del Boy’ ring!
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As the fascination with celebrity related items continues, this year LEPRA has decided to launch an appeal for signed copies of celebrity books. This appeal known as ‘The Big Book Pledge’ is being backed by two celebrities – Heather Mills McCartney & Kenneth Branagh. Both celebrities are very keen to support this appeal and help raise awareness of LEPRA. |  |
We have now mailed around 900 celebrities asking them to sign and donate their favourite book to the appeal. So, very soon we should be receiving lots of items through the post. These donations will then be auctioned on the ebay website later this year and an update on the appeal will be in the next copy of LEPRA News and on the LEPRA website. 21/07/2004.
LEPRA's CEO receives CMG. Terry Vasey who was named a Companion of St Michael and St George in the New Year's honours lists, was at Buckingham Palace in June to receive his award from our Patron Her Majesty the Queen.
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It was a wonderful occasion Terry said and a great honour to be one of only 1,317 Companions. He added that during the investiture, Her Majesty was delighted to hear about LEPRA's achievements. 21/07/2004. |
LEPRA Bangladesh begins new TB work. From August 2004 LEPRA Bangladesh will begin receiving $1.79 million over five years for its TB control programme from the Global Fund, via the Government of Bangladesh. LEPRA Bangladesh is currently working with a TB control programme in Sirajganj, Pabana and Natore districts where the case detection of new smear positive cases is less than 30%. The task for LEPRA Bangladesh is to reach 70% of new case detection by 2007. The grant is in recognition of the great work done by our colleagues in Bangladesh.
| Last year the Global Fund for TB, malaria and HIV/AIDS approved support for the Bangladesh National Tuberculosis Programme of US$ 42 million over 5 years. The Government of Bangladesh is determined to reach the global targets for tuberculosis control, namely to detect 70% of new smear-positive cases and cure 85% of them at national level by the end of the year 2005 level. 21/07/2004. |  |
Update from Africa. A representative from LEPRA recently attended the Annual National Leprosy Elimination Programmes Review Meeting in the WHO African Region, held in Harare, Zimbabwe.
Other participants included national programme coordinators from countries with high leprosy prevalence (Angola, Madagascar, Mozambique, Republic of Central Africa, Democratic Republic of Congo, Tanzania), countries where leprosy has been eliminated (Benin, Burkina Faso, Cameroon, Zimbabwe) and countries where leprosy services have been integrated in the primary health care service (Mali, Nigeria and Zambia). Despite the different country scenarios, all countries share common difficulties with the availability of trained staff and quality and quantity of supervision.
The presentation on the experience of leprosy volunteers in Mozambique provoked the most discussion and there was much interest in sustainability issues. Both Benin and Mali also reported on the key role local communities play in their leprosy programme activities.
In small working groups participants were able to incorporate their views into a regional leprosy post elimination strategy to sustain quality leprosy service after 2005, when the elimination target is expected to be reached. Key concerns reflected include the need for advocacy to ensure continued political commitment, the need for referral structures at the appropriate sub national levels and the increased relevance of partnerships. 21/07/2004.
Essay Competition Winners 2004. Since 1985, LEPRA has regularly invited UK Medical Students to enter its annual Essay Competition. This year, for the first time, the competition was kindly co-sponsored by St Francis Leprosy Guild. This year’s essay titles, on which students were invited to submit entries, were:
Three prizes were awarded this year. Two runners-up prizes of £250 were awarded to:
Michelle Williams, a 4th year student from the University of Edinburgh, for her essay on "How can adherence with multi-drug therapy in leprosy be improved?"
Anya Leiva, a 4th year student from the University of Cambridge, for her essay on "How can adherence with multi-drug therapy in leprosy be improved?"
The first prize of £500, went to Joy Rafferty, a 4th Year student from the University of Dundee for her essay on "How can stigma against leprosy be reduced." Our congratulations to all three winners, who are pictured here with Dr Diana Lockwood. (from left to right: Joy Rafferty, Dr Diana Lockwood, Anya Leiva and Michelle Williams. 01/07/2004. |
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The fundraising goes on for Joan Leach. We were all terribly saddened last year by the death of Wally Leach at 103 – his contribution to LEPRA’s work overseas is incalculable, and he is sadly missed. However Wally’s life was spent in partnership, in every sense of the word, with his wife Joan, and we felt it would be fitting to pay a special tribute to her work.
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Joan went to Theological College in Edinburgh where she studied Church History and the New Testament, and after the war she went to St. Bridget’ House, which ran pre-missionary training courses, and then she went to teacher training college. She had hoped to go out to Ghana with the Community of the Resurrection, who had schools in Accra and elsewhere. However, before the Community would accept her she was advised to do at least two years’ teaching in the UK. She actually completed four years, and it was during this time that she met Wally. |
Joan and Wally were married in 1953 at the Kumi Leprosy Settlement in Uganda. Dr. Ross Innes (LEPRA’s Medical Secretary at the time) gave Joan away, and Dr. Harold Wheate (whose obituary appears elsewhere on this site) was best man, and they had the distinction of being married by two Bishops! After their marriage Joan and Wally moved to the isolated settlement of Makutupora in Tanganyika.
Under the Child Adoption Scheme (which had been initiated in 1936), Joan undertook the writing of letters and reports on the children to their various ‘adopters’. This was a time consuming and onerous task, but extremely valuable. With her training as a teacher, Joan also taught at the settlement school, but it wasn’t only academic skills she taught them, she also taught them beadwork. The girls of the settlement were employed making pot covers, belts and other useful items which were sold to provide an income. The older women were encouraged to use whatever skills they had, be it pot making or weaving mats.
When Wally retired in 1964 the couple returned to the UK. Joan began making dolls’ clothes and embroidered handkerchiefs, but later concentrated her efforts on making jewellery after her daughter brought home some beads from Covent Garden. When Joan went to give a fundraising talk to a school in Lambourne, the Headmistress suggested she could sell the items she made for LEPRA. The rest, as they say, is history.
Joan’s jewellery has become legendary, and there is no occasion at which it is not in evidence – birthday parties, wedding anniversaries, talks, coffee mornings - every opportunity to make money for LEPRA is exploited. Joan’s jewellery even turns up, on an annual basis, at the LEPRA staff conference! This generosity isn’t just confined to Joan though. When her son Jonathan was married, the bride and groom asked not for wedding presents, but for donations to LEPRA.
Joan, with Wally, has raised over £35,000 for LEPRA over the years, and she continues to raise money now. We would like to take this opportunity to express our deep gratitude for all that she does for us, and to send our love to a very important member of our fundraising team. 28/05/2004.
Obituary – Dr. Harold Wheate. We are saddened to announce the death of Dr. Harold Wheate on 19th April 2004 at the age of 86. His association with LEPRA began when he was sent out to Nigeria for BELRA in the summer of 1947 to gain experience in leprosy work after war service in the RAF. He later went to East Africa to work at the Kumi Leprosy Centre in Uganda from 1949 to 1953.
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From 1954, as government leprologist in Tanganyika (now Tanzania) he was sent to Makete and oversaw the building of the new hospital there before becoming Director of Training at ALERT in Addis Ababa, Ethiopia from 1974-1980. Before his retirement he worked for a few years at the ILEP office in London. Dr. Wheate, a much-respected member of the LEPRA Medical Advisory Board, was a familiar face at LEPRA AGMs, and his trademark ‘guffaw’ laugh cheered the hearts of many. A deeply Christian man, Dr. Wheate served over 35 years in the cause of those with leprosy, and he will be sadly missed. 28/05/2004. |
Memories of my 2004 Marathon. Well what can I say. Due to many commitments going on around me my real training started on 8 March 2004, the realisation had finally hit me that I had only six weeks to go before the big day. From the very early mornings and late evenings in Thailand to avoid the heat to my final days running around Kent, Wales and Plymouth Hoe the big day was drawing near. I had committed myself and there was no turning back but at this stage I was feeling very unsure of things ahead.
| Registration day
I met up with Mark and Sari Woodham (Sari was running the race this
year and did extremely well). I also had the chance to meet Paula Radcliffe
who autographed my running number which gave me great motivation. I
was now ready for the big day less than 48 hrs away.
Sunday 18 April 2004 I awoke about 3.30am and prepared myself for the day ahead. First thing I did was look outside for the weather; yuk!!!!! Rain and more rain - this is just what I did not want but heh, never mind. |
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I had lots of family and friends supporting me and off we went to the starting area at Greenwich. You really had to be there to hear the buzzing of supporters and runners raring to get started with only seconds to go on the journey of 26.2 miles (42 km).
At just about 3 miles I saw a figure in front of me and thought "I know those legs and that head band" so I quickened my pace and caught up with Carolyn Davidson, sporting a red t-shirt with happy 40th birthday written on the back.
Before I knew it I was coming up to the Cutty Sark at around 6 miles (10km) and for the first time saw the familiar faces of my ‘Supporters Club’. They spent the day following me across London on foot and on the Underground and we managed to see each other again at 15 miles, 21 miles and 26 miles.
The whole atmosphere is incredibly friendly and the miles after the Cutty Sark passed in a blur of well-wishers, excited chatter all around, drinks stations and wondering whether to sacrifice 15 minutes queuing at one of the porta-loos. I didn't.
Tower Bridge at 12 miles is the next big landmark. The crowds there are unbelievable and will lift anyone beginning to flag. Soon after this you pass the point where you see the faster runners coming back the other way (they are around 7 miles ahead at this stage). This is where I recognised a voice from the crowd and among all these people there was Paul, Sian & Bethan Haigh. It was a magic moment for me to see them.
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The Docklands crowds
mean you don't get a chance to feel too sorry for yourself and although
the rain was there the crowds were not going to let any of the runners
give up. With your name on your t-shirt they'll call it out, feed you
orange segments and sweets, and the children stretch out their hands
to high five your sweaty sticky ones.
I remember at one point I saw Andy (my husband) in the crowd and I shouted I don’t know where I am or what time it is and he shouted back "you are just passing 21 miles". I could not believe it. I began to think only 5 miles to go but I still had to take it 1 mile at a time. Coming up to the Tower of London are the dreaded cobbles at around 22 miles. I had heard just as much about these this year as last year but got through them again OK. I believe the official photographers were there but I don't recall seeing them. |
And, then onto the Embankment where you begin to feel like a real hero. No one was more amazed than me that my legs could still carry me forward, though not as fast or springy as before.
People all around were running, walking and hobbling but everyone was acutely aware that every step took them closer to the finish line. The crowd had never been thicker, noisier or more supportive - they are literally willing you forward. But above all the noise I managed to hear the voice of the big yin himself, yes John Hector with his wife Helen. John kindly reminded me they had been waiting for me for 3 hours.
Passing Big Ben as it struck 3.00pm was really spooky for me as this was exactly the same time as last year. Birdcage Walk and Buckingham Palace (a big hi to Nigel & Anita Davies) was all wonderful, but honestly as I have said before there is nothing to prepare you for the lump in the throat and welling tears that you experience on turning that final corner in the Mall to see the finishing line up ahead. Whatever the clock is telling you the feeling is euphoria plain and simple. Relief, pain a whole kaleidoscope of sensations. Unbelievably, it's finally all over. You and your fellow 35 thousand companions are all winners whatever your finish time.
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I relinquished my
chip, collected my medal, smiled for the photographers and walked the
walk that only marathon runners understand towards the baggage reclaim
and reunion with my family and friends. Finally, with 3 year old Brandon
rushing towards me with a bouquet of roses not quite understanding
what on earth his nanny has been up to now, it just all seemed so worth
while.
Time: 5hrs 7mins 40 secs (personal best!!) |
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The 2004 Marathon has given me many magic moments not least the knowledge that the money raised from my run will help many people with ‘LEPRA’ and I thank all the sponsors once again for there kind support.
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And finally a big
thank you to all who came out and supported me…
Andy; Dad; Mum; my sister Marie; my daughter Sonia, Chris, Brandon, Joshua; Nigel & Anita; Paul Crompton & Sarah Adams; Sheila & Alan Smith; Mad Mick & Or; Lia & Chris Parkinson; John, Helen, Jane Hector and Jamie; Paul, Sian & Bethen Haigh; Mark Woodham; and Andy King. 11/05/2004. |
Obituary - Mr Humphreys Nyirenda 1957 to 2004. It is with great sadness that we announce the death of Mr Humphreys Nyirenda on 8th April 2004.
Mr Nyirenda has been associated with LEPRA’s work in Malawi since he joined the Ministry of Health in 1986. He was National Programme Manager for Leprosy & skin diseases in Malawi, and had worked with LEPRA from the early stages of his services until LEPRA handed over its leprosy activities to the Government in 1997.
His death is a great loss to the department and also to the patients he served. He is survived by his wife Marrium and his daughter Jannet. 11/05/2004.
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Latest news on Lymphatic Filariasis. The Third meeting of The Global Programme to Eliminate Lymphatic Filariasis (GAELF) was recently held in Cairo, and was attended by LEPRA’s Programmes Development Officer, René Vargas. LEPRA was one of six NGO’s among the attendees, and met with all five of the organisations to explore areas where joint activities may be possible. The aims of GAELF, which was set up in 1999, are to interrupt the transmission of lymphatic filariasis and to prevent the disabilities associated with the disease. Over 120 million people worldwide have already been affected by it, and over 40 million are seriously incapacitated and disfigured by the disease. Parasitic worms lodge in the lymphatic system and upset the delicate fluid balance between the tissues and blood, causing parts of the body to enlarge to several times their normal size. 11/05/2004. |
World TB Day 2004. The startling fact is that every fifteen seconds in the world, somebody dies from tuberculosis. If left untreated, each person with active TB will infect on average between 10 and 15 people every year. With 3.9 million new cases of infectious TB each year and the increasing problems of TB drug-resistance and HIV, TB case detection is now an essential part of many LEPRA projects.
The largest number of cases occurs in the South-East Asia region, which accounts for 33% of new cases globally. To bring the problems of TB to the public's attention World TB Day was held on 24th March and several special events were held to commemorate the day at our projects.
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In India, LEPRA staff and colleagues from LEPRA UK, took part in a rally through the streets of Hyderabad. The theme of the rally was "Every breath counts – Stop TB now!" and staff wore t-shirts and caps, and carried banners which displayed this message. The rally finished off with presentations at Osmania University attended by local dignitaries, LEPRA staff and government health officials. Health workers and patients affected by TB were recognised for their efforts to bring effective treatment to all those who need it. 22/04/2004. |
Fantastic night at 80th Anniversary Ball. A fantastic night of celebrations was held at the Savoy Hotel on the 15th of March to celebrate LEPRA’s 80th anniversary. HRH Princess Michael of Kent kindly attended the event as guest of honour, having just flown in from the United States. Her Royal Highness has supported the charity at a number of events in the past and expressed her pleasure to be able to lend her support for the cause once again.
Actor Stephen Fry, one of LEPRA’s most dedicated supporters, entertained guests with his wonderful charm and wit, inviting the audience to reach deep into their pockets to raise funds for the charity. Stephen gave a wonderful, heart-felt speech about the work of LEPRA and highlighted the major issues people face around the world living with devastating disease and illness.
Miss Rhona Cameron, the sparkling comedian and writer, auctioned off a variety of luxury gifts and travel experiences to raise £6,450 from the auction alone! Miss Cameron admitted that this was her first time acting as auctioneer but with her tenacity and wonderful humour, she managed to charm large bids from those assembled.
After a fabulous four course dinner, guests enjoyed the music of the British Philharmonic Orchestra’s dance band until the early hours of the morning.
LEPRA would like to make a special note of thanks to Baroness Von Posch and her team who helped create such a stunning and enjoyable occasion. Without the dedicated support of people such as the Baroness, Mrs June Torrence and Mr Mark Clarkson, the event would not have taken place. Thanks also goes to all those who kindly donated gifts for the auction and raffle and to Swan Hellenic, LEPRA’s corporate partner who donated a wonderful cruise aboard their flagship, Minerva II. 30/03/2004.
Chief Executive attends Royal Commonwealth Day. LEPRA’s Chief Executive Terry Vasey attended the ‘Observance for Commonwealth Day’ at Westminster Abbey on Monday 8th March. The service was attended by Her Majesty the Queen, His Royal Highness the Duke of Edinburgh and His Royal Highness the Prince of Wales.
Commonwealth Day was celebrated with special gatherings across all Commonwealth countries. These included receptions, prayers and speeches based on this year's theme, 'Building a Commonwealth of Freedom'. 30/03/2004.
Bike Rider shares her memories of India. The cyclists who went on LEPRA’s first India bike ride for 2004 returned home recently. They were full of high spirits and keen to tell stories about the trip and what a breathtaking experience it had been. Everyone on these bike rides enjoys keeping a daily diary to try and keep the memories alive for as long as possible. Here is an extract from the diary of one cyclist Jane Langdon. She is a loyal supporter and she has just completed her fourth bike ride for LEPRA!
| "Despite the long relentless hill cycle yesterday over the bumps and potholes of India's roads, I woke refreshed if not quite raring to go. After all, it was only just after six in the morning but with the sun rising through the early morning mist and the tranquillity of the surrounding paddy fields, it would be criminal to miss the chance to soak up the heady atmosphere that is India. Jenny (the cyclists’ team leader) had suggested that we just have a cup of coffee and then get an hour's cycling under our belts before breakfast. We are all used to early starts now so there was unanimous agreement and off we all set towards the first of the many receptions that had been arranged for us. |  |
The crew had travelled on before us and set up 'camp' beside a railway line with panoramic views of the river below meandering through the valley as far as the eye could see. The sweet fried bread and jam with a boiled egg tasted like nectar, washed down with a weak milky coffee - is this the same person who would normally have a black coffee and yoghurt?
We only had a few more miles before we arrived at the village of Lamptaput. Here the school children were lining both sides of the road chanting 'Welcome LEPRA UK' as we cycled in. It was World Leprosy Day and the local team had arrived ahead of us to arrange our welcome. Our saddle sore bodies and aching limbs paled into insignificance at the sight of all the innocent smiling faces and big brown eyes of the little children.
| Their curiosity got the better of their shyness as they edged closer and closer to gaze bewildered at these strange beings dressed in odd clothes and hard hats. But sign language and smiles go a long way to break the ice and soon the sounds of their laughter and chatter filled the air. The older ones presented us with a garland to hang round our necks and handed us a small bouquet of fresh wild flowers. We met three patients with leprosy and the health worker explained the treatment and prognosis for each one. |  |
It never ceases to amaze me how we can restore a human's life and dignity for so small a sum of money. The undoubted success of the LEPRA projects is clear to see.
All too soon we were off again and we shook hands with the children and waved goodbye to all the villagers. At first the road was very rough with pot holes, loose gravel, sand and stones but then it suddenly became tarmaced and we started a long descent through the woods into a fertile valley below. Yet again Purnah (the Indian leader) had produced a veritable feast for lunch and we dined on dahl, rice, fresh naan bread and popadoms and three other dishes that I can only describe by colour! One was a killer for chillies - Jenny's favourite - and another had a tomato base with fresh fish. The third appeared to be baby aubergines cooked in a curd sauce that was definitely voted dish of the day by us all. After a long break - needed after such a wonderful meal - we were back on our bikes to cycle the remaining 10 miles or so to Jeypore. After about 20 minutes it began to rain - the first time this trip. No-one minded getting wet but I know it will be hell trying to wash the red mud splashes out of the tee shirt later on. Just as we reached the outskirts of the town I managed to hit a pothole and get a puncture. As we were so close to our accommodation for that night I just put the bike in one of the back up trucks and drove with the crew through the town.
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As soon as we arrived Simon and Bruce came to
help me with my tyre and the inner tube was soon replaced. So there
will be no excuse for me not to ride tomorrow!
We spent the evening with some of the staff from LEPRA and they talked a lot about their rehabilitation programmes and giving help and support to patients who have been cured. Inevitably some are still left with deformities which curtail their ability to return to their original trade so it is rewarding to see how much importance LEPRA now gives to continuing to help these people. After dinner a few of us wandered down towards the town to find a phone booth to ring home. The Indian telephone system is brilliant and it only costs peanuts to call home for a chat - so efficient - even in the remotest of villages you can always find a booth. |
By ten we were back at the hotel and ready for bed. We try and share rooms with a different person each night which is a great way to get to know your fellow cyclists! I always finish my day by writing up my diary of events but sometimes sleep overtakes me and I just give in and crash out peacefully before that early morning call beckons us once more to the tribes and villages of Orissa."
If you are interested in taking part in a LEPRA bike ride to India or Madagascar please contact Sarah Green, Events Co-ordinator on 01206 216725 or via e-mail at sarah_green@lepra.org.uk. 17/03/2004.
Obituary - Valerie Collacott MBE. We were saddened to learn of the death of Valerie Collacott recently, a dear friend of LEPRA and President of the Exmouth LEPRA Committee for a number of years.
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Valerie Marguerite Ponsford was born in June 1911, her father was a schoolteacher and her mother a postmistress. She grew up in Kenton and married Jerry Collacott in 1939 - just before the outbreak of war. Jerry was drafted up and posted overseas and in his absence Valerie was trained in Estate Agency & Valuation at a time when few women entered the profession. Upon Jerry's return home after the war, the couple took over the Exmouth estate agency firm of E. Hayne and ran it successfully for almost 30 years. Valerie was a lady of many talents and unbounded energy and she worked tirelessly for many charitable causes both before and after her retirement from business. She was a member of the Inner Wheel for over 50 years, holding office several times, and was made an Honorary Life Member. |
In 1954 Valerie formed the Exmouth Branch of LEPRA and held the office of chairman continuously until 1999, when advancing years compelled her to stand down. Upon her retirement from the position, the committee voted unanimously to make her Honorary Life President. During her 45 years as LEPRA Exmouth Branch Chairman she held every meeting in her own home and refreshments were always provided. Over the years, Valerie and her colleagues in the Exmouth committee have raised many thousands of pounds towards curing people from leprosy.
In January 2000 at the age of 89, Valerie was awarded the MBE in the New Year Honours List for her services to the relief of leprosy. She later described the day and her meeting with the Queen as "the proudest moment of her life". Valerie was devoted to her family and had a wide circle of friends - all of whom will miss this lady of courage and conviction. 17/03/2004.
New initiatives planned for 2004. LEPRA’s budget for 2004 again contains plans for several new or expanded initiatives. Details of newly approved budget lines are given below.
| Projects in India |
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Andhra Pradesh Counsellors Project £227,800 LEPRA India has taken on 240 new counsellors to help in the fight against HIV/AIDS in Andhra Pradesh as part of the Frontier Prevention Project (FPP) of the international HIV/AIDS Alliance. This work is being undertaken in partnership with the Andhra Pradesh State AIDS Control Society, UNICEF and the District Coordinator of Health Services. With an estimated 400,000 cases of HIV/AIDS in Andhra Pradesh, the State has one of the highest prevalence rates in India and, as with leprosy, the stigma and discrimination attached to the disease are enormous. |
Using its existing infrastructure, LEPRA India has established Voluntary Counselling Testing Centres in all the Government medical colleges, large district hospitals, and area hospitals, offering counselling services on a one-to-one basis. There are also Prevention of Mother-to-Child Transmission Testing Centres which offer information and counselling services to attendees, advising them for instance on the most appropriate medication to take in order help prevent mother-to-child transmission. This new initiative is a further example of LEPRA India using its facilities and knowledge base to benefit people suffering from diseases other than leprosy.
Krishna Community Health Intervention Project £575,279 over 3 years
The Community Fund has agreed to support a three year project in Krishna District, Andhra Pradesh. LEPRA will be working to reduce the vulnerability of poor rural and urban communities to the spread of leprosy, TB, HIV/AIDS, malaria and other diseases of poverty, and will focus on improving the health of the most disadvantaged people including street children, tribal communities, slum dwellers, rural & urban women and rural agricultural labourers. LEPRA will be working with two other partners to ensure that the health needs of these disadvantaged communities are addressed, and that knowledge and awareness of these diseases, and where they can be treated, is increased. Two microscopy centres will also be supported, to strengthen coverage of TB services.
| Projects in Brazil |
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Ceará State Dermatological Training £3,800 The purpose of this funding is to facilitate the provision of decentralised leprosy services, as a means of reducing the very high numbers of patients currently using Dona Libania, a specialised national referral centre for basic leprosy services. Activities will include:
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Ceará State Groupo Apoio Pacientes do Hansenaise (GAPH) £1,300
GAPH is a leprosy patients’ rights group founded within the Dona Libania Reference Centre in 2002 in Ceará state. GAPH is almost entirely composed of current/former patients and health professionals from the centre, seeking to join together to engage in group support and socio-economic rehabilitation (SER) training.
Activities being funded include leadership training, citizens’ rights workshop, human relations, theatre arts, computing skills for adolescents, artisan projects for the elderly, woodworking and jewellery assembly. Their handicrafts are sold at fairs and other gatherings, with proceeds being reinvested to purchase materials. Autonomous production of jewellery and other handicrafts has been the result.
Small Project Fund £4,200
A small project fund has been approved for use by LRA, (LEPRA in Brazil). It will enable funding of small projects to support initiatives which will benefit people affected by leprosy.
| Research and Training |
LOSOL £1,400
LEPRA is presently supporting a research project, the Longitudinal Study of Ocular Leprosy or LOSOL study. The main objectives of this multi-centric research project are to provide information on the prevalence of eye damage in leprosy and related risk factors. Preliminary findings from the study suggest that even in the face of active efforts to fight leprosy, around 11% of patients, at the time of diagnosis, will have eye problems which could lead to blindness and 2.8% will be diagnosed blind.
This study has now reached its final phase. During 2004, a final examination of around 230 patients will be carried out and the key findings and recommendations will be summarised in a field manual for health workers, expected to be out this year.
Scientific Co-ordination Group £35,700
Prior to his untimely death, Dr. Jo Colston had proposed that the success of the approach adopted for the INFIR studies (ILEP Nerve Function and Impairment Research Study) could be adapted and used to support further collaborative leprosy-related research. His vision coincided with that of Tropical Disease Research (TDR) in Geneva who simultaneously identified a number of priority areas for pursuing leprosy research. Jo Colston, Diana Lockwood and Cairns Smith were identified by TDR as the group who should develop ideas and initiatives to address the promotion of research in the areas of nerve damage and reactions. Following Jo’s death, LEPRA decided it would be a tribute to his vision and commitment to continue to pursue this idea.
A research proposal arose out of a 3-day workshop held in London last year, and looks to build on, and learn from, the experience of INFIR. It develops the coordination and multi-disciplinary collaboration of the INFIR approach but will not manage or directly fund the individual research projects. It was considered more appropriate to set up a coordinating mechanism which could take forward the ideas from the workshop and support increased multi-disciplinary collaboration between research groups in different countries to both develop and undertake new research initiatives.
The proposal identifies ten specific areas of research to be promoted over the next 5 years. Disability and impairments are the consequences of leprosy most important to patients. This proposal represents a comprehensive, integrated and strategic approach to research, targeted towards their treatment and prevention. Funding is still being sought to enable this co-ordination group to be taken forward.
| Other Areas |
Bangladesh - Global Fund money £980,000
Global Fund will be paying for TB element of our work in Bangladesh. The GF, in its third call for proposals, approved a grant of US$ 43 million for the Bangladesh National TB Control Programme over 5 years. The budget for the first two years has been approved and for the remaining three it has been approved in principle. LEPRA Bangladesh has a memorandum of understanding with the Government of Bangladesh for working in three districts (Sirajganj, Pabna and Natore) supporting the tuberculosis control programme. The funds that LEPRA Bangladesh will get from the Global Fund through the National TB Control Programme over 5 years, 2004-2008, will amount to £980K.
LEPRA and the future of our work in Mozambique
Since 1999, LEPRA’s support to the tuberculosis and leprosy programme in Zambezia Province, Mozambique, has been carried out by field representative Dr. Wolfgang Hippke and his wife Jane. Dr Hippke, a German dermatologist with prior experience in developing countries, has provided a valuable contribution to the training, planning and capacity building components of the programme, while Jane’s physiotherapy skills have made a difference in terms of the prevention of disability in the province.
Based on the achievements of the Zambezia programme, the Mozambican Ministry of Health proposed the transfer of Dr. Hippke to Maputo, the capital city, to take up the role of advisor to the National TB/Leprosy Programme. From Maputo, where they moved in January 2004, Wolfgang and Jane will continue to visit Zambezia on a regular basis, while progressively extending their support to other provinces where leprosy is highly prevalent.
LEPRA plans to continue its support to Zambezia province, to ensure that the many health needs of the province continue to be met.
| Potential Future Expansion |
Guatemala
Work is underway to develop a proposal for TB and malaria work in Guatemala, following a fact-finding visit to the country late in 2003 and early 2004.
Malaria in Guatemala. The proposal aims to address a growing concern in the Guatemalan government, focused particularly on 5 health districts (in 3 departments), about the continuing and increasing burden of disease and death due to malaria.
The project is being built on the work of past successful small-scale efforts in malaria-affected departments, and will support the scaling up of actions against malaria. The departments highly affected by malaria (97% Plasmodium vivax and 3% Plasmodium falciparum) are Alta Vera Paz, Petén and Quiché. A number of intervention strategies will be implemented such as: rapid blood tests, early diagnosis and prompt treatment, impregnated mosquito nets, vector control and chemoprophylaxis.
Tuberculosis in Guatemala. For tuberculosis, Guatemala is the most endemic country in Central America. The disease has the highest incidence in the 8 poorest of Guatemala’s 22 departments. These 8 departments include the three already mentioned for malaria, plus Huehuetenango, San Marcos, Quetzaltenango, Totonicapan and Sololá. After Hurricane Mitch in 1998 there was some limited external support provided in the above areas for TB control, thus enabling expansion of the National TB Programme. The proposal will aim to scale up and strengthen the TB control programme to render it effective and sustainable. The case detection rate is 30% on average in the project area.
India, Orissa, Ganjam & Gajapati Districts - HIV/AIDS
The problem of HIV in India is massive. Nevertheless, the Indian government has categorized Orissa as a low prevalence state for HIV/AIDS and therefore very little is currently done by the state in this regard. One of the reasons for classifying Orissa as having a low prevalence is the lack of a good information system. The number of positive cases newly detected in 12 sentinel surveillance sites in the state was 25 in 2001 and 44 in 2003, according to the government. Currently there is no reliable data on the real HIV/AIDS situation and trends in Orissa.
Most of the positive cases detected are migrant workers from the poorest districts of Orissa - Ganjam and Gajapati. Given that a high percentage of migrants have spouses, infection among women and children must be assumed. In a Rapid Appraisal Study made by LEPRA in 2003, in 6 blocks out of the 26 in the two districts, 300 HIV positive cases were found in Ganjam with 42 deaths in last quarter of 2003.
A concept note was submitted to the EU at the end of January this year, and we await an invitation from the EU to submit a full proposal for funding consideration. 02/03/2004.
Celebrity Jewellery auction raises almost £15,500. LEPRA's Celebrity Jewellery auction, held using on-line auction house eBay, was the second such event held following last year's Celebrity Shoe Auction and once again was a huge success. The auction itself has so far raised a total of £10,475 but there are still some items that are being re-listed and we hope that these will take the total over £11,000. In addition to this, Sir Elton John made a donation of £5,000 towards the appeal taking up towards the £15,500 mark. Several of the lots were won by Jersey based organisation Jersey Goldsmiths who intend to put them on display in a Celebrity Memorabilia Museum.
We received and auctioned 107 pieces of jewellery from celebrities such as Heather Mills McCartney, Ringo Starr, Vivienne Westwood, David Jason and Robbie Coltrane. The highest bids were received for Heather Mills McCartney's Sapphire & diamond gold ring at £1,300 (pictured top right) and David Jason's Chunky gold 'Del Boy' ring which he wore in the BBC comedy Only Fools and Horses and reached £517.50 (pictured bottom right). A complete list of winning bids is shown below. |
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Complete list of final
sale prices of Jewellery Appeal items sold.
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Name
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Item
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End Bid
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Week
1
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| Fay Ripley | Black feather choker | £19.99 |
| Lorraine Kelly | Flower beaded choker and matching clip on earrings | £82.00 |
| Anthea Turner | Celtic horse earrings | £50.00 |
| Cherie Blair | Charmelle black and gold costume necklace and matching drop earrings | £122.00 |
| Dinah Sheridan | Boxed variety of earrings, broach and necklaces | £10.50 |
| Davina McCall | Pearl Vivien Westwood necklace | £230.00 |
| Charlie Dimmock | Amber beaded bracelet | £40.00 |
| Virginia McKenna | Beaded droplet clip on earrings | £50.00 |
| Toyah Willcox | Bright amber cross and ring | £80.00 |
| June Whitfield | Black and pearl beaded chocker necklace | £100.00 |
| Twiggy | Sapphire and diamond effect broach | £100.00 |
| Liza Tarbuck | Beaded silver droplet earrings | £80.00 |
| Stella McCartney | Silver zip necklace (from her latest collection) | £215.00 |
| Darcey Bussell | Panther broach | £311.00 |