May 2012
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NEWSLETTER  May 2012

To All Our Friends:

Another year has passed and as always we extend a huge thank you to everyone who continues to support AFRT. We continue to appreciate that there are enormous financial pressures in the world today but feel humbled by the interest and amount of time that is given to raise funds and awareness for our cause.  We are very pleased to let everyone know that, thanks to the continued generosity of all our friends, it will be possible to commit to a further year of sponsorship of research at the Royal Marsden. Thank you.

In April the Trustees were made very welcome by the team at the Royal Marsden where we were given a presentation and an update on the project. As always, it was an emotional visit but the dedication and commitment of all involved shines out so clearly. We left uplifted to know that progress, although the steps may be very small, is being made.

 
           Members of the award winning team at the Marsden

Again we heard of how funding and awareness for brain tumour research continues to be poor and disproportionate and of how grateful the research team are for our continued and vital funding. A summary of the report follows later and the full detailed and technical report can be found through clicking here.

We were privileged to meet and spend time getting to know Dr Ioanna Fragkandrea, a lovely lady, highly qualified and committed and a vital member of the team.   Ioanna will continue with our project taking over from Matilde who has been successful in gaining a post at The Sarah Cannon Institute.  We wish Matilde well and extend our grateful thanks for all that she has done for us.

Ioanna Fragkandrea – A Profile

It is a pleasure to introduce myself as the researcher on brain tumours sponsored by the Alison Fracella Research Trust. My name is Dr Ioanna Fragkandrea and I am a Clinical Oncologist with a specific interest in the field of Neuro-oncology.

I qualified in 2006 from University of Ioanina (Greece) with distinctions in Medicine, and completed my post-graduate studies in Clinical Oncology, MSc with first class honours, at the Medical University of Athens, (Greece).

During my training I was awarded a scholarship at the University of Muenster (Germany), Department of Academic Radiotherapy, where I investigated the role of different radiotherapy techniques in several cancer types, fuelling my interest in cancer research.

 I am a member of a number of international bodies and member of the Hellenic Association of Clinical Oncologists that contributed to the development of treatment protocols in cancer patients. I am a founding member of two professional bodies, Hellenic Association of Head and Neck Cancer and Hellenic Association of Bone Metastasis. I have been engaged in epidemiological research in paediatric brain tumours and was proud to be part of the board developing the first national paediatric tumour data base in Greece.

Following completion of my speciality in Clinical Oncology, I was awarded a Scholarship from The Institute of Cancer Research at the Royal Marsden Hospital, UK, Department of Neuro-oncology and Lung Cancer, where I have been working for the last 2 years on combined modality treatments for brain and lung cancer patients.

In June 2012 I was delighted to be given the opportunity to join the Neuro-oncology research team, Department of Neuro-Oncology Unit at the Royal Marsden Hospital, UK as a Clinical-Research Fellow running clinical trials in brain tumours, translating research into reality for brain cancer patients.

Whilst I have I gained a broad experience in the treatment of all cancer types, I have always had a specific interest in the epidemiology and treatment of brain tumours.  Brain tumours, constitute an heterogenous and complex clinical entity, and we have a long way to go in the direction of gaining a better understanding of specific disease patterns and in order to identify more effective treatments.

Currently, The Institute of Cancer Research in association with the Neuro-oncology Unit at the Royal Marsden NHS Foundation Trust is involved in the development of targeted therapies for brain tumours. While in the era of targeted therapeutics, combination of more than one agents are investigated in the context of phase I/II innovative clinical trials, aiming to find better ways to fight this heterogenic disease.

The pioneering collaborative clinical trial with Cancer Research UK and the University of Glasgow, testing the role of olaparib (PARP-inhibitor) in recurrent glioblastoma has successfully been enrolling patients. This trial is first of its kind and we hope that in the near future we will be in the position to know if the investigational drug is successfully delivered to the tumour and targets inhibition by the use of biomarkers. We are in the process of opening an innovative phase I/IIa trial investigating the role of PIK3-beat inhibitors in patients with recurrent glioblastoma.

Continuous translation between research and patients care is essential and part of my role as investigator on brain tumours is to build and secure sustainable bridge between them. I am determined that through this opportunity I can best support brain tumour research in the context of a reference hospital and a world known research institute that demand clinical excellence.

I passionately believe that it is essential to understand that despite the rarity of brain tumours, this entity does exist and needs to be equally prioritised in the policy-makers’ agenda. We, as clinicians, need to focus on brain tumour research in order to improve our daily practices and care for our patients. The Brain Tumour Initiative and the Alison Fracella Research Trust provides us the support needed to meet that criteria and continue our much needed joined efforts to the direction of more effective treatments for primary brain malignancies.

Dr Ioanna Fragkandrea

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 Brain Tumour Initiative:

The Royal Marsden NHS Foundation Trust and

The Institute of Cancer Research supported by:

The Alison Fracella Research Trust

 

We remain extremely grateful to the Alison Fracella Research Trust for the support given to The Institute of Cancer Research (ICR) and The Royal Marsden Hospital (RMH) towards our Brain Tumour Initiative. Through a shared vision with the Alison Fracella Research Trust, we are aiming to make real advances in the treatment options available to glioblastoma patients.

 Glioblastoma Multiform: current treatment limitations, challenges and future directions

Glioblastoma Multiform (GBM) is the most common primary brain malignancy in adults. Under the umbrella of ‘GBM’ diagnosis lies a mixed group of tumours which might look the same physically but which often respond differently to the same drugs, and with different clinical outcomes. Such differing behaviours may be due to genetic variations and hence the focus of much research is shifting towards the analysis of the genetic profile of different GBM tumours.  Overall, prognosis of glioblastomas remains uniformly very poor and there are still many questions to be answered around the management of this challenging and dreadful disease, necessitating advances on all scientific and clinical fronts.

What scientists have achieved so far?

Currently, the gold standard of care for patients with newly diagnosed glioblastoma is surgery followed by radiotherapy and chemotherapy with temozolomide. The addition of temozolomide has been shown to provide a modest improvement in survival of 2.4 months so there is still a long way to go to improve the outlook of this disease.

What makes this disease so challenging and difficult to manage effectively?

Unfortunately, there is no easy answer to that question as the disease is very complex.

Firstly, it is very difficult to get treatments to travel into the brain because it possesses a specialised structure (the blood brain barrier) that prevents many types of drugs from entering.

The research group at The Institute of Cancer Research (ICR) and The Royal Marsden Hospital (RMH) are currently investigating how much of a therapeutic drug actually reaches the brain tumour and what effect it has on the tumour in an early phase clinical trial.

Secondly, patients with brain tumours are often taking many other types of drugs to control the disturbances of the brain which have been caused by the tumour. These other treatments may interact with the tumour treatments, perhaps making them less effective or causing potential complications.

Thirdly, as mentioned above, the name GBM actually represents a group of different tumours. This creates extra challenges in understanding the underlying disease processes.

Finally, these tumours are notorious in their ability to return, and despite improvement in neurosurgery, chemotherapy and radiotherapy, this hasn’t changed significantly over the last 20 years.

Our achievements to date

We have conducted experiments to classify glioblastomas into four subtypes according to genetic differences: the Proneural, the Neural, the Classical, and Mesenchymal subtypes. Tailoring treatments to patients based on which GBM subtype they have might change the outcome of the disease, especially as much research continues in the field of personalised medicine.

Our researchers are also working to identify genetic changes that may in future be useful as diagnostic or prognostic tests, although none of these are yet in routine practice and more research is required.

Another area that our researchers are interested in is targeting the blood vessels that supply tumours with the blood that they need to grow. Glioblastomas are particularly rich in blood vessels and our team are investigating factors that could stop blood vessel growth. We are currently participating in a large European late phase clinical trial (the AvaGlio Phase III trial) which is testing the role of blood vessel growth inhibitors as a potential first line treatment for GBM.

Several other studies have been conducted in GBM patients to investigate using drugs to target alternative ways in which tumour cells grow. So far the results suggest that we are likely to need use combinations of these drugs to have a significant therapeutic effect.

There are also on-going trials to predict how particular tumours will respond to specific treatments. Our hope is that by throwing light upon individual alterations in glioblastoma cells, we will be better able to match patients with the most effective therapy for their particular tumour.

We would like to extend our gratitude and thanks for the generous support of the Alison Fracella Research Trust, which enables us to translate hope into reality for patients with primary brain tumours.

Note:

Currently at The Institute of Cancer Research and The Royal Marsden NHS Foundation Trust Hospital patients can be treated in the context of the following trials:

·         A phase III study, investigating the role of bevacizumab in the first line treatment for patients with GBM

·         The Phase I/II trial of BIBW 2992 and radiotherapy with or without temozolomide in patients newly diagnosed with GBM

·         PARP inhibitor Phase I trial for patients with recurrent GBM

·         Cediranib plus Gefitinib study (AstraZeneca/NCRI initiative-NCRI study) for patients with recurrent GBM

·         National Brain Tumour (NBT) study investigating the genetic component of the disease

·         The Phase I/IIa first time in human study investigatinfg the role of GSK2636771 (a PIK3- beta inhibitor) for patients with recurrent glioblastoma with PTEN deficiency.

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Fund Raising

Hadleigh Boys Do Well in Great East Swim

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Many congratulations go to Hadleigh boys Roy Death his two sons Kern and Truan and to Tom Olive who successfully completed a grueling two mile swim  in the Great East Swim at Alton Water on June 11th in memory of a beautiful friend Alison Fracella (nee Kettlewell) Cheered on by family and friends they all swam in record times, in fact Roy came 1st in his age group- some feat!! It was a really great day and we are so very proud of them all for swimming and for raising an incredible £845 including Gift Aid for the Alison Fracella Research Trust.

Roy is a Trustee of the charity. All monies raised from the swim will go towards the research project into brain cancer that the Trust is currently funding at the Royal Marsden Hospital in collaboration with the Institute of Cancer Research.

Our very grateful thanks go to Roy, Kern, Truan and Tom for such an amazing achievement and to everyone who sponsored their swim. Thank-you all so very much

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 (as modeled above!)  which are now available to purchase . 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.

3 Peaks Challenge

snowdon Many congratulations to Jenny Reynolds and her partner Ross Bates and to the team for successfully completing their challenge on August 13th.

The challenge that they set themselves was to climb the three highest peaks in the UK in just 24 hours. It was a grueling time for them with high winds and torrential rain creating treacherous conditions underfoot. (the practise climb the previous week was done in beautiful sunshine!)  We are very proud of them for making it in the time despite all the problems and being held up in heavy traffic driving from Scafell to Snowdon. Many thanks also to the donator of the Land Rover complete with a tank full of fuel. Jenny and Ross have raised with Gift Aid a total of £1273.26 to date for which we are very grateful. Well done to you both.

 

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Congratulations to Jenny and Ross from us all at the Trust on your forthcoming wedding on June 23rd. We wish you every happiness and hope the sun shines for you on your special day.

On the August 13th Ian, son of dear friends Lindsay and Graham, was married to Ruth at a beautiful wedding held in the Chapel at Woodbridge School. It was a wonderful occasion and they so very generously donated £60, the proceeds from a competition held at their reception, to the Trust. It was great fun trying to guess the number of paper birds, all beautifully made by Ruth, in a cage. Lindsay was a founder member of the Trust and would have been so very proud of them both.

Class of 91 Hadleigh High School Reunion

  On the 10th September The Class of 1991 held a 20 Yr Reunion . It was great to catch up with old friends and to remember two very special ones sadly no longer with us, Alison Kettlewell and Andrew Hambling.

John, Carl, Elaine and Emma-Lyn did an amazing job of organising such a wonderful evening and we were very touched to be presented later with a cheque for £281.59 as a donation to the Trust in memory of Alison. The same amount was given to the Children’s Hospice in memory of Andrew. Our special thanks must also go to Amber for all her efforts with co-ordinating the fund raising.

Bells Ring Out for the Mayor

In September Sue and Rob were honoured to be invited to a Civic Service in St Marys Church Hadleigh as representatives of the Trust and to attend the Civic Reception afterwards. The Hadleigh Town Mayor Miss Penny Cook has very kindly nominated the Trust as one of her chosen charities for the year.

 

On 4th May Penny hosted a Charity Cream Tea and Cake Sale in Hadleigh Town Hall. The teas were delicious and very much enjoyed by all with the cake stall magnificent with an array of wonderful home made cakes and sweets. The raffle added to the fun and helped raise funds. Special thanks to Penny and Elaine to everyone who worked so hard behind the scenes and on the day to make the event such a success.

 

The Quiz held on the 18th May had excellent support.  It was a great evening enjoyed by all. Many thanks to everyone who helped raise funds for us at this event.

Congratulations to our Trustee Graham Panton who was in the team which finished second!

Donations

We are grateful for a number of cash donations received during the last year, a very big thank-you for these.   A reminder that we are registered for Gift Aid. This means that we can claim back income tax based on your contributions if you are a basic rate tax payer,tell us to do so, and give us your address.

The 49 Club lottery

The 49 Club lottery continues to raise considerable funds for us and our grateful thanks go 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.

Parliamentary Lobby

A big thank you to everyone who lobbied their MP in support of the Brain Tumour Manifesto presented to Parliament. You can still lobby your MP and request that more funds be allocated to research into the dreadful Glioblastoma tumour.

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 continue to be committed to the research project being conducted at the Royal Marsden Hospital and remain forever grateful to everyone who has made contributions in both time and money 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 any way please do get in contact with us.

Thank you

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

May 2012

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