Text JHMR00 to Issue 10 Canada Donating by TEXT – 70070 European Respiratory Society Congress: anti-asbestos triumph a reminder! Plans to resume asbestos mining in Canada Last year we set up a new method for our Vienna September 2012 have been abandoned following public supporters and their family and friends to pressure and a change of government. Fund make donations via text messaging, using the Our Fund was represented for the second A senior research fellow at the University of Leeds, Dr Hill has patron Laurie-Kazan Allen said: “This is the JustTextGiving facility. been working closely with the European Lung Foundation year running at this prestigious international result of years of campaigning by the global Simply text JHMR00 and the amount you newsletter (ELF) to develop an online training programme for patients network of ban asbestos activists who wish to donate (e.g. £5) to 70070. Your text Autumn 2012 meeting of lung health specialists. and lay members of the public who want to become have worked tirelessly to raise awareness will look something like JHMR00 £5. advocates in health care and research. of the asbestos hazard in Canada and You can donate £1, £2, £3, £4, £5 or £10. It’s Trustee Kate Hill is a member of the European Respiratory abroad. It really is a testament to what can ELF was founded by the European Respiratory Society in 2000 be achieved when dedicated people work simple and convenient, and it will hopefully Society (ERS) Patient Advisory Committee and, although the with the aim of bringing together patients, the public and make it easier for our fundraisers to generate main respiratory diseases like Asthma and Chronic Obstructive together towards a common goal.” For respiratory professionals to positively influence respiratory more information, see the IBAS website donations from friends, family and colleagues. Pulmonary Disease are a major focus of ERS interest and medicine. Dr Hill is involved in a National Institute of Health All text donations are free and won’t come activity, it is nonetheless important that rare diseases like at http://ibasecretariat.org/lka-canada-no- Research funded project in the Leeds, York, Bradford CLAHRC more-asbestos.php out of any inclusive texts you have as part mesothelioma are also part of this forum. (Collaboration for Leadership in Applied Health Research and of your price plan – even if you’re not with Care). Speaking about the collaboration with ELF, Kate Vodafone. You simply pay the cost of your Kate demonstrating the said: “Our Yorkshire collaboration has provided some 7th Patient & Carer Day – donation. If you are a UK taxpayer, you may programme to an Italian great opportunities to build partnerships outside the London 6th October 2012 wish to add Gift Aid to your donation. You Donating online research community in which I usually work. can do this – just follow the instructions you delegate at the Congress. Trustees Adrian Budgen and Kimberley It’s easier than ever to register your Fund awards £120,000 for receive by text every time you make a donation Stubbs will be attending the 7th fundraising event online, or to make a “At the ERS Congress last year I became aware using JustTextGiving. By adding Gift Aid, you’ll Mesothelioma Patient & Carer Day in donation to someone you know who that ELF were planning a patient and public help us reclaim the tax on your donation chemo research London on Saturday 6 October at the is registered and raising money for the involvement programme with very similar aims from HMRC. Thank you – every penny you to the one we had in mind for the CLAHRC. Pullman London St Pancras Hotel. The event Fund. Here’s how: is designed to help mesothelioma patients, donate using JustTextGiving comes directly It made sense to join forces and develop a to the June Hancock Mesothelioma Research A new £120,000 research project into the treated – are resistant to Vinorelbine. Our study aims and is being funded by Mesothelioma Just Giving – simply log on to www. programme that could be used by patients with Fund. If you are a fundraiser it is possible to to establish what proportion of patients have this any type of condition.” UK. This is a unique opportunity for justgiving.com effectiveness of chemotherapy treatment for mesothelioma patients and their carers use JustTextGiving to collect donations from ‘resistant’ form of mesothelioma, and to find out how your friends and family – to get started simply mesothelioma patients is to be funded by The main focus of the European Patient to hear from a number of experts in this CAF (Charities Aid Foundation) – simply this resistance occurs. create a free JustGiving fundraising page and Ambassador Programme (EPAP) is to help people field, across various disciplines including log on to www.cafonline.org the JHMRF. The Leicester University project build the skills they need to find and organise surgeons, oncologists, researchers, nurses, a Vodafone Individual Code (VIC). Contact us In this way, treatment can be personalised for those for help, or follow the simple instructions on was chosen from a highly competitive field of information about health and research, and to legal advisors and complementary therapy Donations can be made securely online, who could benefit; this targeted approach holds the JustGiving website www.justgiving.com/ applications across the UK. gain knowledge of healthcare systems and research providers. Question and answer sessions are which makes this a great way of great hope for improving the success of future drug methods to enable them to become effective partners part of the day. Please come and see Adrian justtextgiving. collecting sponsorship money for your A team led by Professor Dean Fennell will look at development in all cancers, including mesothelioma. in influencing health care services and medical research. and Kimberley at the JHMRF stand – we’d fundraising events. how chemotherapy can be targeted at those who will The training programme will be modular and will allow love to see you there. Travel insurance for The study will be carried out in the laboratory using people to learn at their own pace. A pilot version of EPAP was benefit from it, and in particular the role of the gene mesothelioma patients Help us by: archived tissue samples to determine whether patients launched at the ERS Congress meeting but further feedback Christmas cards BRCA1 in identifying such patients. will be needed from the user group at which the programme We have been contacted by a patient with mesotheliomas that do not have the BRCA1 gene Remember we have a selection of JHMRF is aimed before the final version is ready to go live on the who praised the services and costs of a Adopting the Fund as your “Charity Mesothelioma remains a difficult disease to treat and derive less benefit from treatment with Vinorelbine. If Christmas cards available to buy and every travel company called InsureCancer (Medi of the Year” if you are a business or web. If you would like to find out more about the ERS Patient options for patients are limited. Chemotherapy is the results provide evidence that the presence of BRCA1 Advisory Committee or the EPAP project visit the ELF website penny of the profits are put straight back TravelCover Ltd). Having made many calls to corporate donor at http://www.european-lung-foundation.org (link to patient into the Fund. Packs range in design and travel companies, this family were pleased to usually the first choice if patients are well enough to can predict those individuals who will benefit from size and are priced around £3.50. If you receive a quotation that was reasonable, and Making a Gift Aid or tax efficient Vinorelbine, the next stage will be to test this theory in networks) or contact Dr Hill via the JHMRF email: info@ donation undergo a prolonged course of treatment. Nevertheless, junehancockfund.org. wish to sell them for us as part of your meant that the whole family could go away on response rates are modest: only a quarter of patients a randomised clinical trial. This trial is already planned fundraising please let us know. You can holiday together. They wanted to share their Setting up a monthly direct debit or also buy packs individually from us – just experience with other patients and families. with mesothelioma treated in this way show a with the support of the pharmaceutical company that standing order donation manufactures Vinorelbine. get in touch. The telephone number is 01252 780190. reduction or a slowing down of progression in their Organising your own fundraising tumour. A significant number of patients suffer side- We thought it important to pass this There is an urgent, unmet need to identify more event effects of chemotherapy without any actual benefit, so information on, and we hope it is helpful. effective therapies for treating patients with Are you planning a Registering your fundraising event on targeting treatment is a critical issue. mesothelioma. This project will help develop fundraising event? Just Giving www.justgiving.com Do you know someone who would like to personalised therapy and provide much needed Research portfolio update Please let us know if we can help – we or CAF www.cafonline.org Leicester researchers will help identify people likely receive our Newsletter? Please contact us to benefit from treatment with a novel drug called improvements in care for patients with The latest news on all the projects funded by the JHMRF. have a number of items such as wristbands, with their details, and we will make sure Making an endowment or leaving the trolley coins and lapel ribbons that can be they receive copies in the future. Fund a legacy Vinorelbine, which has shown promising activity against mesothelioma; it has real potential to impact useful at your charity events. Sponsorship mesothelioma by speeding up the rate of the tumour’s directly on patients’ survival, and the Fund forms are downloadable from our website Tell us what you think! natural cell death. is delighted to be able to support this Immunology www.junehancockfund.org and t-shirts are Sponsorship forms can now available too. We would love to hear your feedback and be downloaded from www. vital project. A paper by Dr Saly Al-Taie and others reporting the JHMRF-funded study conducted by the immunology research suggestions as to what you would like to see junehancockfund.org Vinorelbine has been investigated in clinical trials in included in future Newsletters. Do you have the UK, where it has been given to all those eligible team at the Velindre Cancer Centre in Cardiff was published in the April 2012 edition of the journal Lung Cancer. The Fund welcomes all donations large This study investigated the activation and relevance of T-cells in malignant pleural mesothelioma and established some good ideas to help our fundraisers and for chemotherapy. Preliminary findings suggest that supporters? If so, please tell us about them and small to support its work in memory the groundwork for a randomised trial of immunotherapy in patients. of June Hancock. patients with mesothelioma cancer cells that fail to and we can share them with everyone else! carry a gene called BRCA1 – around a third of all Cell biology The study of ER Stress signalling carried out by Dr Stefan Marciniak and his team at the Cambridge Institute of Contact us Donating by text Medical Research was completed in February 2012. An academic paper will report the findings later this year. In addition to the main findings, this study also led to the refinement of TMA (Tissue Microarray techniques) and Write to us or send donations to: Via our website: Donate by text for free. Simply text JHMR00 and the amount you wish to identified the multiple, additional mutations in existing mesothelioma cell lines that indicated new cell lines were www.junehancockfund.org required for use in experimental studies. The June Hancock Mesothelioma donate (You can donate either £1, £2, Research Fund £3, £4, £5 or £10) to 70070. Your text By telephone: Riverside East, 2 Millsands, will look something like JHMR00 £5. Brother Peter Fellowship Sheffield S3 8DT 0114 274 4420 Welcome to our new Patron! A major achievement in 2012 was the award of the first JHMRF Clinical Fellowship, the Brother Peter Fellowship, to Dr Nicolas MacLeod. Dr Macleod is based in Edinburgh and will conduct a study in palliative and Rachel Reeves, Leeds West MP and Shadow Chief Secretary to the Treasury, was Please make cheques or postal orders payable to “The June Hancock Mesothelioma Research Fund”. supportive care to assess the value of radiotherapy in the control of pain and other symptoms experienced by invited by Russell Hancock, Trustee of the JHMRF and son of June Hancock, to patients with mesothelioma. If you are a UK taxpayer living in this country please include a Gift Aid Form so that the Fund become a Patron of the Fund. See inside. can reclaim the tax. (Gift Aid forms available on request). donate FUNDRAISING ROUNDUP Our fundraisers have been working hard again this year, very often raising money in For Lisa’s Gran 11-year-old Alex Hughes memory of a loved one. Thank you to everyone who has contributed to some amazing loved and adored his Lisa Wright sadly lost her Grandma to Granddad Matt Barbour, fundraising – we appreciate every penny. Here’s just a few of the many fundraising mesothelioma just before Christmas 2010, who sadly died from Alex climbs events that have gone towards mesothelioma research:- and so she decided to host a music event mesothelioma in February The Lung Run in Manchester in May 2012 to raise money 2011 without hearing specifically for research into the disease. Her the wonderful news that for his The 2012 five-kilometre Lung Run took place on Sunday Grandma suffered with mesothelioma for 2 September in the Wiener Prater Park in Vienna. The run, Alex had gained a place at almost four years, and Lisa felt it was very Grammar School. which is held during the European Respiratory Society’s important to help raise awareness of the Grandad annual conference, marked the final event for World Family pair reach Everest base camp illness too. Thanks for all your fundraising and “He would have been so Spirometry Day 2012 organised by the European Lung Nina Atkinson and her brother-in-law successfully completed a trek to Everest Base Camp hard work in putting the event together Lisa. proud of me,” said Alex. As Foundation. Nearly 400 runners turned out at 7:00am on a fine, part of his induction at his new cool Sunday morning to compete in the run, including double and managed to return home in one piece. Said Nina: “It was probably the best thing I have ever done and enjoyed every moment of it. I am particularly proud of having Thanks Surrey Lodge school, Alex was given a summer medal-winning Olympic rower, Olaf Tufte, from Norway. challenge, including raising raised just over £1,300 that I hope will go to great use.” In May this year the Provincial Grand Master Olaf, who runs his family farm, suffers from severe asthma but has never let his condition get in money for charity. Alex chose the Nina felt it was important to do something that could contribute towards of Surrey Mr Eric Stuart-Bamford, hosted a JHMRF in memory of his Granddad, the way of his sporting aspirations. JHMRF Trustee Kate Hill, who was attending the ERS Congress, presentation event to hand over a cheque to also joined the runners and came home in a respectable 142nd place, completing the course in the research in finding a cure for mesothelioma, as her mother-in-law had and alongside his Dad decided to been diagnosed with the disease two years earlier. the JHMRF. A number of Lodges and Chapters climb Mount Snowdon on 11 August 26mins 1sec – “Given the competition,” said Kate, “ I was really pleased not to be the last person from within the Masonic Province of Surrey across the line!” We think you did fantastically well Kate! 2012. Said Alex: “My Granddad was very “Doing this trek was a fantastic opportunity to raise both collected money for the June Hancock fund. special to me and I miss him very much. I awareness as well as funds towards this really important cause The donations were gathered together via want to not only raise money in his memory About the that is very close to my heart” said Nina. We say very well their “Surrey for Surrey Scheme” and for but to raise awareness of this terrible disease and done and thank you Nina – an amazing feat. which we are incredibly grateful – thank you to help others.” Fund and June to everyone who contributed. A grand total Welcome to our new Patron! of £1,900 was raised. When Alex returned to school at the end of August Family and friends wishing to carry Rachel Reeves, Leeds West MP and Shadow Chief Secretary to the Treasury, he presented a PowerPoint to his peers and teachers about on June’s quest for justice, and to was invited by Russell Hancock, Trustee of the JHMRF and son of June mesothelioma and the dangers of asbestos. help other sufferers both now and Adrian Fear Hancock, to become a Patron of the Fund. She has always been supportive in the future established the June Claire Ridley’s father Adrian Fear passed away The weather was kind and Alex succeeded in climbing to the summit of Snowdon – of our work and for victims of the horrendous asbestos legacy in Armley, Hancock Mesothelioma Research as a result of mesothelioma on March 29 WELL DONE ALEX!! He proudly wore his June Hancock Fund T-shirt all the way. Alex has Leeds, where June Hancock was exposed to asbestos as a small child. Fund in 1997 shortly after June’s this year. Claire asked for donations to the raised nearly £700 for mesothelioma research – a huge thanks to him and his family and We were absolutely delighted when she accepted. death from mesothelioma. JHMRF charity instead of flowers at her Dad’s supporters. “I am very proud and I know my Granddad Matt Barbour would be too” said Here’s what Rachel had to say:- In memory of Ray Holland funeral, and raised £1,350 for mesothelioma Alex. We are proud of you too. June’s mother, Maie Gelder, also research. What a wonderful tribute to the died from mesothelioma in 1982 “I am proud and honoured to have been invited to become Patron of Anita Holland’s father Raymond Holland was a dockworker who was exposed to memory of Adrian Fear, and we extend not and it was that double tragedy the June Hancock Mesothelioma Research Fund. asbestos like many others, and subsequently succumbed to mesothelioma. Anita just our thanks to everyone who donated my Dad is no longer with us, I am sure he that led June to seek justice in The Fund is crucial in the battle against the devastating effects of is determined to help raise awareness of the disease amongst dock and industry Debi Eastman raises money money in his memory, but also our sympathy will be there with me, pulling me or pushing a test case against the owners mesothelioma, often contracted in the workplace. June Hancock workers, and to raise funds in memory of the many who had died. to Adrian’s family and friends. in memory of her Dad me up ‘them’ peaks.” of the J W Roberts asbestos fought against the terrible legacy of the JW Roberts factory in Armley, Together with her elder sister Lorraine, her husband Stewart, Anita’s son Ryan and Claire’s fundraising in memory of her Dad factory in Armley, Leeds. They and paved the way for many others to fight against this awful disease. Debi’s exciting challenge involves trekking had negligently contaminated her husband Roy, Anita embarked on the 96-mile West Highland Way on 28 July continues with ‘The Adrian Fear Masquerade Debi got in touch with us to let us know The fight for the government to take asbestosis victims seriously is not up and down 24 peaks in the Lake District in their own workforce and the 2012, walking from Milngavie, near Glasgow to Fort William. As if that wasn’t tough Charity Ball’ which is being held on Saturday about her Charity Challenge in memory of over, and the work to support those suffering from asbestosis, pleural 24hrs of trekking. The Lake District is home local neighbourhood with deadly enough the plan was to then climb Ben Nevis to complete the fundraising event. All 10th November 2012. Please get in touch her Dad Richard Lewis Morgan, who died plaques and mesothelioma mustn’t stop.” monies raised – £2,227.50 – have been donated to our Fund. with us if you would like more information. from mesothelioma in 2009. She had been to some of the most rugged and challenging asbestos dust. This was described mountains in Britain giving it its reputation Rachel Reeves MP, Leeds West planning to help raise funds and awareness as a true “David and Goliath” All being well, Anita’s cousin is planning a sponsored sky dive next year for the Claire’s family are also members of a local as one of the best natural adventure play battle and against all the odds Amateur Dramatics group, and their annual of mesothelioma for a while, and eventually Russell Hancock added “Rachel’s predecessor John Battle was also a patron of the Raymond Holland Dock Workers Memorial Fund/June Hancock Fund, so this may grounds in the U.K. This is a challenging trek June won her case and proved summer concert was dedicated to raising chose the JHMRF because the research we Fund, and a person who cared deeply about his community and the injustices that so many only be the start of this family’s fundraising ventures. Anita says she is hanging up her both mentally and physically with a long that T&N were negligent. money for the JHMRF for mesothelioma fund is specifically for mesothelioma. asbestos victims faced. In Rachel we are lucky to have found someone who cares just as deeply walking boots for a while though, “just till the tootsies get better.” day of trekking, but with stunning views June was 61 years old and her research. If you would like to know more and is able to pick up where John left off whilst providing a voice in not just the community but On the 21 Sept – 23 Sept 2012 Debi has of the Lake District and a fantastic sense of Mum 67 years old when they about the group go to http://www. in the wider sense, via the media and in Parliament. John Battle was a wonderful supporter of the set herself a personal challenge to climb 24 achievement when you complete the trek. lost their lives to mesothelioma pastichemusicaltheatre.co.uk/index.html Fund and a voice for victims and we shall always be grateful for his dedication and commitment. Peaks in 24 hours. Debi said: “My challenge – exposed as a young innocent We wish Debi all the best with this amazing He remains a friend to us all. We are extremely grateful and proud that Rachel has joined us as Claire has also arranged a cake bake sale at will take me to some of the most beautiful family living in the shadow challenge, and say a huge “THANK YOU” for Patron of the Fund” Malcolm Davidson – a truly epic story her place of work. and most challenging peaks in the Lake of the factory. District, such as Scafell Pike. Even though donating all monies raised to The founders of the June Hancock of a day on Ventoux the JHMRF. If you would like Fund pledged to continue raising to sponsor Debi please see awareness of the disease, helping On the 24th of June 2012 Malcolm Davidson (affectionately known as ‘Mad Mal’ to his “My motivation and thoughts her JustGiving page. provide up to date quality A delicious afternoon completed his challenge “Les Cingles du friends and family!) completed the gruelling during my challenge were, how information and advice, and Action tea with scones and Mont Ventou” a 136km French cycle route, leg of the Tour de France – a route he has low I was during/after having to finance independently jam was served soon in 8hrs 40min 45sec, raising money for the already cycled a staggering 13 times previously chemotherapy and how weak I reviewed specific mesothelioma after. Thanks to JHMRF and prostate cancer. A tremendous – before enjoying several other rides across was and where I am today doing research projects. Mesothelioma everyone who came – achievement – even more so considering that Europe and returning back to the UK. this mighty challenge. I would Malcolm has mesothelioma himself. Yet despite think ‘which was the worst of the We continue June’s battle in her getting through that Workers rain was no mean feat! his diagnosis, Malcolm, from Rothwell, Leeds Here’s what Malcolm had to say about his two?’ Chemotherapy won. name. For contact details Day 2012 Ventoux challenge. see back page. Thanks go also to the many asbestos victim “To keep my concentration going I Memorial Day – “The conditions when I started my first ascent For a full list of our trustees Our annual event to mark national Action support groups and JHMRF fundraisers all would count to 15 then count again. from Bedoin were a comfortable 25°C lovely and founders please visit our Mesothelioma Day was held on 6th July at the over the country who organised events and clear blue sky. After the first ascent I made the I consumed: – 6 energy bars, 6 Isotonic Northampton Area website Thackray Medical Museum in Leeds. Despite fundraising to mark Action Mesothelioma Day the torrential downpours the event was well – your kindness and generosity is appreciated descent to Malaucene reaching speeds up to gels, and 10 litres of fluid. www.junehancockfund.org attended and provided an opportunity for very much, and allows us to continue our work 53mph. The second ascent from Malaucene Trades Council got very hot reaching 42°C. My wife Norma did a fantastic job patients, their families and anyone interested in funding high quality mesothelioma research. supporting me providing me with all in mesothelioma to hear short presentations “My second descent to Sault the longest at the food and drink I required. To say the support us again from a number of speakers. 26kms was slower due to bad road surface and least her job was as hard as mine, The Northampton Area Trades Council have not as severe a gradient, my third ascent from Chapeau to her.” It was a friendly, informal afternoon that supported the JHMRF and made a number of Sault to the famous Chalet Reynard was very focussed on mesothelioma research funding, very generous donations over the years. We hot again but, turning left for the final 6kms Malcolm is a true inspiration to us all, and and also how best we can raise money thank them for their continued support; it’s of climbing the Mistral struck that was a real we think he sums everything up by sharing fundraising ideas and working very much appreciated. struggle at 4mph to the top, with 1km to go I wonderfully when he says “cycling is my together. The event evolved into a workshop form of escape, and helps me feel alive. paid homage at the memorial to an old racing Alida Coates, Partner and Head of Workplace style session which proved very valuable Just because I have cancer does not mean I adversary who died on the Ventoux whilst Illness at Irwin Mitchell Solicitors visited indeed. Huge thanks go to our keynote speaker have to stop living!” and expert charity fundraiser Mr John Haigh of trying to win the Tour de France for Great members of the group in Northamptonshire Martin House Children’s Hospice in Boston Spa, Britain in 1967 “Mr Tom” (Tommy Simpson). Many professional cyclists describe this race and collected a cheque on our behalf for £1,525. This is such a wonderful gesture, and who gave up his time to share ideas and good “My final descent back to Bedoin was ecstatic as one of the toughest climbs in France. we are very grateful to all involved. practice for fundraising. His presentation was knowing I had completed my challenge, going Congratulations Malcolm – you are an humorous, participative and very informative, through those bends Left, Right, Left at up to inspiration. Thank you for making a difference. and was enjoyed by everyone attending. Most 45mph was fantastic. people left with a “TO DO” list! Thanks John! www.junehancockfund.org