May 2011
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NEWSLETTER May 2011

To All Our Friends:

As always we extend a huge thank you to everyone who continues to support AFRT. We appreciate that there are enormous financial pressures in the world today but we continue to feel humbled by the interest and amount of time that is given to raise funds and awareness for our cause. Thank you.

There’s a lot to report this month and we are very excited by the wide range of news that we have ranging from fund raising (we will never stop!) to research to lobbying Parliament. But first we would like to pay tribute to our dear friend Lindsay Panton.

Tribute to Lindsay

The sudden loss of Lindsay Panton Description: 111_1154_RJafter a short illness has left a void in many lives.  As a founder member of AFRT we owe Lindsay the deepest debt of gratitude.  Having known Alison from a baby Lindsay was passionate about the Trust and our aims.  Always a giver, Lindsay was so generous with her time and with her love. She was Alison’s favourite primary school teacher; her lessons were always such fun.

Throughout Alison’s illness Lindsay was there for her and she supported us, her grieving family, through the most desperate of times. Lindsay instigated and organised many of the Trust’s fund raising events always, in true Lindsay style, leading from the front, be it her famous Chocolate Cake Mornings or at the helm of our popular Italian Evening.  She took no prisoners when seeking out support for the Trust.  As in all that she did in life Lindsay brought so much to our Trust meetings.  Her drive, wicked sense of humour and indomitable spirit lifted us and spurred us on in our quest to find a suitable research project to sponsor.  She was so thrilled when it came to fruition.  Even during her brief stay in St Elizabeth’s Hospice Lindsay was promoting our cause and making contacts for future fund raising.

We miss her hugely. Our hearts go out to Graham, Christopher, Ian and Josh who she cherished and loved so very much.

Royal Marsden

In our previous newsletter we spoke about the possibility of funding a research project at the Royal Marsden led by Professor Michael Brada. We are very pleased and excited to report that we have agreed to contribute funds to this project, initially for a two year period. This is our first contribution to a research project.

The project is a combined effort by the Institute of Cancer Research and the Royal Marsden to carry out more research and tests upon tumours so that the reactions of tumours to different markers and drugs can be assessed.

The project commenced in 2010 with Dr Matilde Saggese appointed to carry out the research in accordance with the proposals of the scheme. Dr Saggese trained in Florence in Italy and subsequently also worked in New York.  As well as working on the project, she has also reviewed the technical content of our web site which has been updated. There are also new ideas for ways in which our website could further aid patients and these continue to be discussed.

We are very excited that the project is under way but the size of the task to find a solution must be recognised as enormous. Anything to do with the brain is complicated and obviously expensive which is why we are aiming our support initially for two years and are well on the way to funding a third year. To extend support further will depend on a combination of the results of the project and available funds.

For those who wish for more information on the science and pathways nature of the project this is given in our website. Also, we have reproduced a letter from Professor Brada below giving further details of this Brain Tumour Research Initiative. It is not easy to put into plain English but the ultimate aim is to find the best treatment for each individual based upon analysis of that individual’s tumour and type.

The Trustees met our sponsored researcher Dr Matilde Saggese in January 2011 and were very impressed with her care and commitment to joining the excellent research team led by Professor Michael Brada. We spent several hours discussing the project with the team.

We wish Professor Brada and his team every success in the new project.

Dr Matilde Saggese

Matilde qualified in 2001 from University of Pavia (Italy) with distinctions in Medicine and Surgery, and completed her post-graduate studies in Medical Oncology and MSc, with first class honours, at the Medical University of Florence (Italy).

She was awarded a Scholarship at the Sheffield University Genetics Unit, UK, investigating the physiopathology and therapy of bone metastases. Her interest has always been to improve patient care and during her training, as a member of the Italian Association of Medical Oncologists (AIOM), she was involved in developing consensus guidelines and consent forms.

After completing her training she spent 3 years as a Research Fellow in the Department of Cell and Developmental Biology, Weill Medical Center at Cornell University and in the Cell Biology Unit at Memorial Sloan Kettering Cancer Center, New York, working on the epigenetic mechanisms involved in follicular lymphoma progression and transformation.

In June 2010 she joined the Department of Neuro-Oncology Unit at the Royal Marsden Hospital, UK, as a Clinical-Research Fellow running clinical trials in brain tumours.

Matilde comments “My career provided me with a broad experience particularly suited to research developing and testing new therapies. I am a trained medical oncologist experienced in the use of drugs to treat several forms of cancer and this is combined with experience in laboratory research to investigate the biological basis of cancer with a particular aim to develop new targeted therapies. I have had a long standing interest in brain tumours and understand the need to invest more effort and energy to improve the care and treatment for people affected by such difficult tumours. There have been enormous strides in our understanding and treatment of cancer but this has not always been reflected in advances in the treatment of malignant gliomas. While malignant brain tumours can be devastating, their relative rarity in comparison to tumour such as breast, bowel, prostate and lung cancer means that research has not benefited from the same level of funding. I strongly believe I am best placed to bring general oncology and research experience to the benefit of brain tumour research particularly in the setting of a vibrant research institute and first class oncology hospital.

The Neuro-oncology Unit at the Royal Marsden NHS Foundation Trust in collaboration with the Institute of Cancer Research is involved in developing and testing biologically directed therapy. The current collaborative clinical studies with Cancer Research UK and University of Glasgow focus on testing Olaparib (PARP-inhibitor) in patients with recurrent malignant glioma. The innovative study design examines drug delivery and targets inhibition by the use of biomarkers. We also collaborate with pharmaceutical industry trials, multicentre trials of the National Cancer Research Institute (NCRI) Brain Tumour Group and the EORTC, testing new treatments in patients with newly diagnosed and recurrent glioblastoma and anaplastic gliomas.

While the work to find effect target agents for brain tumours has started we need to reinforce the infrastructure dedicated to brain tumour research, and create stronger links between laboratory, translational and clinical research to identify the truly effective treatments and to discard ineffective therapies. The Brain Tumour Initiative of the institute and the hospital supported by AFRT helps us to move in that direction. “

You can read Professor Brada's report here.

Parliamentary Lobby

In March 2011 we lent our support to a lobby by Brain Tumour charities to request more Government funding for Brain Tumour research which at present is grossly underfunded. It is good to know that Parliament has begun taking an interest in brain tumours and our chairman Andy Balchin has been lobbying James Arbuthnot MP who is chairman of the All Party Parliamentary Group for Brain Tumours.

In October 2010, just prior to our involvement, the following press release was issued by a UK coalition of charities. We recognise and fully support this lobby and the manifesto which has been launched.

“A UK coalition of charities has called on the Government to join society’s fight against brain tumours.

Brain Tumour UK, the Samantha Dickson Brain Tumour Trust and Brain Tumour Research, with the International Brain Tumour Alliance, have launched a manifesto for everyone affected by a brain tumour. They hope to persuade the new Government to work in partnership with them to improve outcomes in diagnosis, patient care and research.

Around 8,600 primary brain tumours are registered in the UK every year, although this is thought to be an under-estimate. The National Institute of Health and Clinical Excellence (NICE) reports that “almost half of intracranial tumours are not recorded by cancer registries” and research by the charities has suggested that the true number is closer to 16,000. Secondary tumours in the brain are not recorded, but estimates put these as high as 32,000.

The manifesto was launched at a reception attended by the All Party Parliamentary Group on Brain Tumours, scientists, clinicians, and many brain tumour patients and their families on 14 October 2010.

The manifesto calls on Government to work in partnership with the brain tumour charities to:

·         Ensure early diagnosis and treatment for everyone affected by a brain tumour;

·         Implement the best practice guidance for treating people with the disease;

·         Significantly increase Government investment in brain tumour research.

The manifesto sets out one or more practical solutions to be monitored, to measure improvements towards the lives of everyone affected by a brain tumour.

Rt Hon James Arbuthnot MP, accepting the manifesto on behalf of the All Party Parliamentary Group, commented: “With around 16,000 people in the UK affected by a brain tumour each year, and the number of secondary cancers in the brain thought to be increasing, much more needs to be done to diagnose and treat these diseases more effectively. This manifesto is much more than a plea for funds. It brings together intelligence from across the field and sets out a range of measurable solutions which have the power to transform the lives of those affected by a brain tumour.”

Lobby your own MP

You too can lobby your own MP and we would be very grateful if you did. James Arbuthnot MP, chair of the All Party Parliamentary Group on Brain Tumours has tabled an Early Day Motion (EDM number 996) calling on MPs to support the brain tumour manifesto. All you need to do is to write to your MP, asking them to sign the EDM.

An EDM is a kind of Parliamentary petition which helps to raise awareness and can, if it gathers enough momentum, be debated by MPs. We hope to persuade the new Government to work in partnership with the coalition of charities to improve outcomes in diagnosis, patient care and research.

To write to your MP first visit the Parliament website and use your postcode to find their name and address. You can also email them. Then, tell them about the EDM and the manifesto in your own words, although you can also use this template if you so wish.

Concert for Lindsay

A concert in Lindsay’s memory was organised by Nansi Browne at which the choir Serendipity sang. Lindsay knew and loved Alison all her life and was very involved with the trust and our fundraising events. She was passionate about Music and was a member of the choir. A sum of £988 was raised remembering Alison for Lindsay. There were chocolate cakes and wine in memory of the Chocolate and Coffee Cake mornings held by Lindsay which everybody loved so much. The musical pieces chosen to be played and sang were all Lindsay’s favourites. It was a poignant and beautiful evening.

This is a picture of Serendipity taken in September 2010 when Lindsay last sang with them.

Fund Raising

The 49 Club lottery continues to raise considerable funds for us and our grateful thanks to all those taking part and also to those who have donated their winnings back to the Trust. We are always looking for more participants. Please contact us if you would like a number or details on how to set up a 49 Club for us.

David Reynolds ran the O2 Half marathon in Autumn 2010 and raised £235 for us. Well done and thank you David.

Also taking place at the same time was a collection at Waitrose Sudbury for Local Charities. Many Waitrose supermarkets do this where three charities are selected to participate each month and customers buying goods are given a green token to place in the box of the charity of their choice. In September 2010 we were one of their chosen charities and in that particular month we did rather well. A sum of £477 was received from Waitrose. A great big thank you to all those who supported us at the branch and also to the Branch Staff for giving us the opportunity to take part. If you know any local Waitrose where you think we might benefit, please contact us and we will let you know how best to approach the store and how to give them information on who we are.

David Llewellyn-Jones (centre photo below) successfully completed a 100mile cycle ride in one day this month raising funds for the Trust. Some feat! The amount raised is currently well in excess of £1000 with gift aid, with funds still coming in. The ride started and finished at Debach airfield and took in most of the tourist spots in Suffolk. Congratulations David and thank you! This was a magnificent achievement and we are very grateful and so proud of your accomplishment.

Legacies

One of our supporters and member of the 49 Club Mrs Patricia Reynolds sadly died last year in June. In her will along with other charities she kindly left the Trust a generous legacy. This means that the project which we commenced to fund at the Royal Marsden is now well on the way towards funding for a third year.

[Perhaps not always an easy subject, but if you are able to mention AFRT in your will, we would of course be extremely grateful.]

Donations

We are grateful for all the cash donations received during the last year and also thank all those who generously made donations in memory of Mrs Pat Reynolds deceased which amounted to £520.

We received a very generous donation of £200 from the Hadleigh Thrift shop and also a number of smaller donations for which we are very grateful.

Gift Aid

The Trust is now registered for Gift Aid. This means that we can now claim back income tax based on your contributions if you are a basic rate taxpayer, tell us to do so, and give us your address.

MyDonate.bt

We are now also registered with MyDonate.bt

To find further information about the service, visit the web site at: http://www.bt.com/mydonate   Please, please donate to our cause.

Future Events

On the 11th June one of our Trustees, Roy Death is doing the Great East outdoor swim at Alton Water to raise money for the Trust. Roy’s swim is at 9.00am and he is aiming to do the maximum of TWO MILES so please come along and support him. He will be swimming as a team with his two sons, Kern and Truan. We wish them all the best of luck for their forthcoming event and hope they manage to secure many sponsors.

If you are planning any kind of future fundraising event please let us know. Look out for our distinctive “Say NO to Brain Tumours “  T-shirts in grey and pink which will be available to purchase shortly.

Please remember that any amount of money for our trust is wonderful and should there be any event that you wish to do, we truly hope you will please remember to include us in your list of worthwhile causes. The way we are structured means that we have an absolute minimal amount of admin costs with virtually every penny raised being targeted towards the research project.

And finally…..

We remain totally dedicated to and passionate about passing on all information concerning Glioblastoma and we are determined to provide as much support as possible to sufferers and their families. We support the brain tumour manifesto and we are committed to the research project being conducted by Professor Michael Brada, Dr Matilde Saggese and team at the Royal Marsden.

We will continue to ask for funds and remain forever grateful to everyone who has made contributions in both money and time to our cause. We firmly believe in the objectives of the Trust and we are committed to funding research projects to help us fight Glioblastoma! If you can help in anyway please do get in contact with us.

Thank you

Andy Balchin, Robert and Sue Kettlewell, Graham Panton and Roy Death

May 2011

EDM letter

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