LepraNews Autumn 2015
www.lepra.org.uk
In this issue • Happy feet with Pavers •T aking the first steps to a future full of hope •C hanging lives with technology
Patron: Her Majesty The Queen
In this issue Page 3 Our fundraising values Page 4 Taking the first steps to a future full of hope Page 5 Happy feet with Pavers Page 6 Remembering wonderful friends Page 7 Events update Page 8 Changing lives with technology We update our Facebook page and Twitter tweets daily so please like and follow us! facebook.com/LEPRAHealthinAction @Lepra_HinA We’re also on Instagram! instagram.com/lepra1 Our front cover features Anowar. Read more about his life on page 4.
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Have you joined the Beat Leprosy campaign? Supporters like you are helping us to change the lives of millions of people affected by disease, poverty and prejudice. We would especially like to thank you if you are one of the many people who have already joined our Beat Leprosy campaign. Together we are taking three crucial steps to stop leprosy destroying lives: fighting prejudice so people no longer fear getting treatment, pushing for earlier detection and diagnosis to save people from disability and helping the millions disabled by disease to rebuild their lives. If you haven’t yet pledged to support the Beat Leprosy campaign, you still can at lepra.org.uk/beat-leprosy
“ As an ambassador I aim to raise awareness of these stigmatising diseases” Dear Supporter,
Rajeev Sharma with Charles Bland, Chair of Trustees
I am deeply honoured to be associated with Lepra, and to have the opportunity to introduce this latest newsletter to you. Lepra has a history of tremendous research and accountable work stretching over several decades.
As an orthopaedic surgeon with experience of working with leprosy patients in India, I have seen first-hand the stigma attached to leprosy and lymphatic filariasis. It is heartbreaking to see the effects of this prejudice. To be shunned by family and friends because of disability and the visible signs of disease is inhumane, and it needn’t be the case.
Our fundraising values We take fundraising and relationships with our donors very seriously. At a time when fundraising methods are under scrutiny, we think it important that you know all about our approach. We only keep essential information relating to your support and the way you would like to hear from us. We don’t share this information with any third party for contact or sales purposes. From time to time we may telephone donors if you have given us details to do so, but we do not make ‘cold’ calls for support. Where Lepra takes part in marketing activities we are very careful to work with companies that have good credentials, match our values and have high standards. We belong to professional membership bodies, such as the Institute of Fundraising and the Fundraising Standards Board, and comply with their best practices. We adhere to our policies on privacy and standards, which are on our website or can be sent to you if you contact us. We have amazing supporters, whether you have just found out about our work or like many have been with us for four or five decades! You are the lifeline to the millions of people we are able to help. Thank you so much for your ongoing support. Sarah Nancollas Chief Executive
Leprosy is curable, but health education and access to vital services are a necessary part of this fight to change lives. With your generous support, we can continue increasing awareness of Lepra’s work and helping people with leprosy access the care and assistance they need. Thank you for your support,
Rajeev Sharma Lepra Ambassador 3
Taking the first steps to a future full of hope Making Anowar’s dream a reality
Anowar was only 10 years old when he contracted leprosy. Now 30 and with a wife and daughter to support, he is learning to live with the effects of disability. Anowar has no feeling in his feet and his right hand is clawed. He has hope, though. As part of a self-help group in his village in Sherpur in Bogra district, Bangladesh, Anowar has learned to look after the ulcers on his feet. He is proactive in dealing with prejudice too.
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Anowar had always dreamed of starting his own business but, as someone affected by leprosy, this had always remained beyond reach. Yet, with a small loan from the group, Anowar has now opened a village shop. He sells essentials such as oil, rice, spices – and, much to the delight of the local children, sweets!
Working hard to rebuild his life With the profit, Anowar has recently bought 35 ducks. He is so proud to be supporting his family. He has also had reconstructive surgery on his hand and is waiting for eye surgery too. Anowar has lagophthalmos, one of the effects of leprosy, and is
not able to close his right eye, leaving him in constant pain and at risk of permanent loss of vision. The surgery costs just £150 but would be impossible for Anowar to fund himself. However, with the help of our supporters, we can refer him for treatment and he will be able to sleep soundly again. Thanks to the support of his self-help group and his own hard work, Anowar has regained his self-respect and hope for the future.
£150 could
fund life-changing eye surgery for someone like Anowar, saving them from pain and permanent sight loss.
Thank you Pavers – you make happy feet! A Lepra shoe technician in India Pavers Shoes (www.pavers.co.uk) has funded a brand new mobile footcare unit in Bihar state, India. The vehicle was chosen for its suitability for rough roads, as it will be travelling thousands of miles around 20 districts of the state in just its first year.
Bihar has a population of more than 100 million. If this state was a country, it would be the third poorest in the world as 80% of the people live below the international poverty line of US$1.25 a day. Bihar has 10% of the world’s lymphatic filariasis (LF) and leprosy burden. People affected by leprosy or LF are 20 times more likely to have foot problems than the general public. Any impairment in the foot affects social, personal and economic life and people affected often do not attend social functions or mix in their communities.
Kitted out to bring footwear to thousands of people The van includes a sewing machine, a grinder for pressing soles, generator and materials to make bespoke footwear. It also includes beds and cooling fans as the shoe technician and driver live in the van until they have covered many miles in adjoining districts. In October alone, they plan to visit 16 communities and leprosy colonies. They will measure and make shoes for around 1,500 people each year. Without the van, these people would not be able to access this service. Film equipment and visual materials will be used to share healthcare and education messages with more than 150,000 people, which will undoubtedly lead to the detection of new cases of leprosy and LF, and help reduce prejudice and stigma.
The vehicle was officially launched in May this year – in the middle of an earthquake! Thank you, Pavers, for making this possible. There will be 3,000 more happy feet in Bihar this year!
People affected by leprosy or LF are 20 times more likely to have foot problems than the general public.
£9 could provide two
pairs of specially tailored shoes to someone with leprosy or LF, enabling them to walk free from the risk of cuts, blisters and permanent damage to their feet.
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Liz Kennedy (fifth from right) and Bob Littledale (fourth from right) on our 2004 fundraising bike ride in India
Remembering wonderful friends Our supporters are at the heart of everything we do, helping bring treatment and support to communities affected by disease and changing the lives of people trapped by disability, poverty and prejudice. We would like to take the opportunity to remember some supporters who are sadly no longer with us, but who all In memory helped us in different ways as volunteers and staff.
Bob Littledale Bob, who passed away in April this year, took part in four Lepra bike rides in India and Madagascar. A dedicated fundraiser and passionate supporter, he raised more than £10,000 for our work in Bangladesh and India.
Liz Kennedy
of Bob and Liz, a fundraising bike ride in India will be organised. Please contact Lizzie Dearling for more information on 01206 216700.
Liz, who raised more than £13,000 for Lepra, died in June. She was an enthusiastic supporter of our bike rides and, from 2004, took part in six rides throughout India. Her friends and family are still supporting us through their donations in memory of a very special woman.
Francis Nichols Francis Nichols passed away in June. Francis was a wonderful champion for people affected by leprosy and had great empathy with the stigma and suffering of disability. He will always be remembered as a special friend who did so much for us as a donor and trustee and as a volunteer in India for more than a year.
Penny Fleming (née Dean) In 1966 Penny Dean was recruited to work as the Sister in the new Lepra wards, Queen Elizabeth Hospital Grounds, Blantyre, Malawi. Her role included acquiring beds, screens, pillows, sheets, curtains and bandages, as well as training nurses, cleaners and orderlies. The highlight of her time in Malawi was an introduction to His Excellency the Life President, Ngwazi Dr. H. Kamuzu Banda. On her return to England, Penny continued to raise funds. Sadly Penny died on 17th June 2015. 6
Events Update 68 miles equals £24,000 We don’t seem to be blessed with perfect weather for our events, but our supporters are not deterred! In June 640 people cycled from Edinburgh to St Andrews and raised this impressive total. We’ll let the riders speak for themselves: “My 20th ride for Lepra and it gets better all the time.” “The best serviced event I have ever been on.” “Great route, beautiful scenery, lovely lunch and tea stops – it is the highlight of my year.” Photo by Stuart Threlfall, cyclist
Thank you to our amazing marathon runners!
“My aim is to cycle 4,000 miles in 2015 (that’s the distance from here to India) and to fundraise along the way. Lepra is a cause that means a lot to me, and as I ride this year I know that every mile will be one closer to my target.” James Cain
We had an amazing Lepra team of 12 runners completing the Virgin Money London Marathon in April. They raised an astounding £20,000. Thank you! Would you like to be on the start line in 2016? We have guaranteed places for next year’s London Marathon – find out more on our events pages. You can also find out more about the Edinburgh Marathon, 10km and 5km fun runs and our London to Paris bike ride at lepra.org.uk/events Clare Shah appreciates the Lepra supporters!
Thank you!
Eileen’s white-knuckle fundraiser
ZIP WORLD©
Eileen Evans, our regional fundraising manager for Central region, celebrated a ‘milestone’ birthday in a hair-raising way! Eileen hurtled down a zip wire at 108 miles per hour at Zip World Velocity in Bethesda, Wales and raised £230! She described it as “terrifying but amazing!” Well done Eileen!
We have new dates for our Trek Crete – 6th to 14th May 2016. Sign up now! lepra.org.uk/Event/trek-crete-2016-visit-spinalonga
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Changing lives with technology Our field workers in Bangladesh, India and Mozambique use the KoBoToolbox app to record data on their phones.
Our programmes team in Colchester has introduced an exciting new way for data to be collected in real time by project workers in Bangladesh, India and Mozambique. Our staff use the KoBoToolbox app on mobile phones to collect real-time data when interviewing the people we work with.
An easy way to ensure our work has the greatest impact This data collection is already making a difference. At the start of our Community Action for Hygiene and Health programme in Bangladesh, the data gave us really vital information on the water, sanitation and hygiene needs of the local population. From the data recorded by our field workers, we know that 88% of the women and men collect
their water from a well without a pump. More than 30% said that the water they use is dirty or has a bad taste or smell and 61% don’t know whether their water is safe. On average, it takes 30 minutes to fetch water from a well. Santosh Roy, Field Organiser, in Bogra district tells us more: “We have already interviewed more than 400 people, recording their responses on the phone. Then, we connect to the internet and send the information to Vera, one of the programmes officers in Colchester. She analyses the data and sends us back really useful summaries and analysis. It is really amazing to get the information like this! It saves time and is easy to understand.” We look forward to sharing more news of how this exciting technology is helping to show the impact of the work you fund.
They connect to the internet and send all of the data they have recorded to our programmes officers based in Colchester.
Facebook.com/LEPRAHealthinAction @Lepra_HinA Lepra, 28 Middlebrough, Colchester, Essex CO1 1TG Tel. +44 (0) 1206 216700 Fax +44 (0) 1206 762151 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) 2157/D/A
This data is analysed and key findings are sent back out to field workers to inform their project work. We look forward to sharing this information with you.