Welcome to BT Buddies

Founded in March 2009 Brain Tumour Buddies is a national charity committed to providing information and support to anyone affected by a high grade brain tumour in the UK.

Our website provides in-depth, accurate and up-to -date information on all aspects of dealing with a brain tumour and has been compiled from a wide range of sources. If you can't find the information you are looking for please contact us and we will do our best to help.

We also offer support to patients, carers, relatives and friends in a variety of ways including in our forum, via email and on our Facebook and Twitter pages.

BT Buddies is able to continue providing information and support thanks to kind donations and generous fundraisers. Funds raised for BT Buddies also go towards funding research into high grade brain tumours.

If you, or someone you know, is interested in fundraising for BT Buddies you can contact us at fundraising@btbuddies.org.uk or call 0845 459 4101. We will also be launching a new section on the BT Buddies website in the next couple of weeks which will include information on how you can raise funds for BT Buddies, resources to help with your fundraising and suggestions for events you can take part in. Watch this space!

Latest news...

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Crown Relocations Pair to Bungee for BT Buddies!

  • Saturday, 25 May 2013 20:34
  • Last Updated ( Saturday, 25 May 2013 20:48 )

Meet Tammy Wilson and Steven Osborne, employees of Crown Relocations in Scotland.

This brave pair will be taking on Scotland's highest static bungee jump in aid of BT Buddies. Based in Clydebank, Glasgow, the Titan Crane Bungee Jump is 150ft of pure adrenalin and fun! 

Tammy and Steven will be jumping on Saturday 29th June at 10am - supported by BT Buddies and all Crown Relocation staff and friends!

To sponsor this brave pair visit http://www.justgiving.com/CrownRelocations and we'll make sure we keep you updated with info and photos following the jump!

Good luck to you both!

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IBTA E-NEWS MAY 2013

  • Saturday, 25 May 2013 20:27

Dear Natalya


If you are having difficulty in reading this version please consult the web version.

Exciting development:  A consortium of 28 Brain Tumour researchers  from institutions around the world recently published a paper on a conceptually new treatment approach for relapsed glioblastoma (GBM). The approach is called “CUSP9” which stands for “Coordinated undermining of survival paths with nine repurposed drugs”.

According to the paper’s abstract, the CUSP9 treatment protocol is based on “a combination of drugs not traditionally thought of as cytotoxic Chemotherapy agents but that have a robust history of being well-tolerated and are already marketed and used for other non- Cancer indications.”  The criteria for choosing the drugs included those that were pharmacologically well-characterised; had a low likelihood of side effect burden; showed evidence of interfering with a “recognized, well-characterized growth promoting element of glioblastoma” and when coordinated as an ensemble, “had reasonable likelihood of concerted activity against key biological factors of glioblastoma growth.”

Nine drugs met these criteria: aprepitant, artesunate, auranofin, captopril, copper gluconate, disulfiram, ketoconazole, nelfinavir and sertraline.  Lead author Professor Marc-Eric Halatsch (University of Ulm, Germany) said: "While the CUSP9 protocol is not clinically validated yet, a reasonable empirical and theoretical basis suggests safety and efficacy of this approach." 

The IBTA has always kept as open a mind as possible with regard to new treatment approaches for GBM. We are featuring a link to the CUSP9 paper in this e-news (see above) to highlight the need to look at innovative ways of treating GBM and therefore invite our readers to share any comments they have on the CUSP9 approach. In the first instance comments for public display can be emailed to the This e-mail address is being protected from spambots. You need JavaScript enabled to view it who will upload them to a webpage. Later, we plan to create a Bulletin-Board type webpage for automated comment if there is on-going discussion. The comments page is located here and already contains an overview from one of the IBTA's caregiver advisors. Comments by patients, clinicians, and researchers would also be welcome.

Research developments: US researchers, who concentrated on DNA analysis of 45 tissue samples of pediatric low-grade gliomas from seven institutions, have found that a gene called MYBL1 was rearranged and missing a part of its genetic message in nearly 30 percent of the tumors categorised as grade 2 .. Chinese researchers have identified that overexpression of the bone morphogenetic protein (BMP) 4 “was significantly associated with low grade as well as the lower mortality of high-grade gliomas in survival analysis” ... Brain tumors were among the 22 Tumor types whose gene expression data was studied by US researchers, resulting in the identification of hundreds of potential drug targets ... Using a grant of $573,000 from the US Department of Defense an Indiana (USA) researcher will study the role of nanoparticles in targeting brain Metastases caused by breast cancer ... An Italian study involving Gaetano Finocchiaro from Milan, and which used mature dendritic cells loaded with autologus tumor-cell lysates, in recurrent GBM patients, has shown promise ... A retrospective single-centre study in Germany, involving 253 newly diagnosed GBM patients, has shown that ALA-Fluorescence-guided surgery followed by concomitant radiochemotherapy, showed significantly improved overall survival in the patients.

Existential dread: Canadian psychologists have identified that Tylenol (acetaminophen), which is commonly used to alleviate headaches, could also be used to reduce a person’s “existential dread” arising from such causes as thinking about death.

Brain metastases: The European-based on-line resource “ecancer” has published several items on brain metastases which can be accessed here.

Company developments: ERC (Epitopoietic Research Corporation) Belgium is appealing for funds to initiate clinical trials for its therapy which aims to simulate the Immune System of glioblastoma patients ... The Dutch to-BBB Technologies B.V.  brain drug delivery company will extend its phase I/IIa study of breast cancer metastases and Glioma to take on two more forms of brain metastases. It has also commenced recruiting in the Netherlands and Belgium ... Agenus Inc announced apparently good PFS and OS results at the American Association of Neurological Surgeons (AANS) meeting for its Phase II trial of standard therapy and its Prophage G-100 vaccine for newly-diagnosed GBM patients.

Deadlines and events: The American Brain Tumor Association has advised that it has a series of brain tumor-related webinars scheduled for the remainder of the year and also have a number of past webinars archived on its website ... Contact addresses for the 2014 Asian Society of Neuro Oncology (ASNO) meeting to be held in Istanbul Turkey are This e-mail address is being protected from spambots. You need JavaScript enabled to view it (scientific) and This e-mail address is being protected from spambots. You need JavaScript enabled to view it (organization) ... There are special entitlements for patient advocacy groups participating in the September European Cancer Congress in Amsterdam, including the availability of free exhibition slots for patient organisations in Patient Advocacy Square which are explained here .. The deadline for applications for eight $1500 scholarships for non-North American medical professionals, being awarded by the Society for Neuro-Oncology (SNO) to attend the November World Federation of Neuro Oncology meeting being held concurrently with the SNO meeting, is 1 July.

Estimating and communicating Prognosis: The authors of an article in the journal Neurology have called for the development of a better evidence base for the “new science of prognostication” i.e. the estimation and communication of “what to expect”, for patients, families and surrogates of those in neurologic care.

Confusing wording: This is the headline in a recent article in Online Pharma Times - "150M euros in new EU funding for brain research". It goes on to say "At the start of its European Month of the Brain, the European Commission has announced funding of around 150 million euros for 20 new international brain research projects, bringing the total European Union (EU) investment in brain research since 2007 to over 1.9 billion euros."

Later, the article states: "The 20 projects which have been shortlisted for EU funding are expected to deliver new insights and innovations in key areas such as traumatic brain injury, mental disorders, pain, Epilepsy and paediatric conduct disorders. The projects cannot be named before the grant agreements are finally concluded, but all are expected to start from this summer, says the Commission, which goes on to note that industry and small business partners will have a particularly strong involvement in three of the areas - mental disorders, epilepsy and paediatric conduct disorders - to fuel innovation and real-life solutions."

It is clear from the above (except for the epilepsy research, which may have some relevance to brain tumours) that the money appears to be intended for the neuroscience and neurodegenerative areas and not neuro-oncology. We would like to be proved wrong. The problem is that people in the general community can obtain the misleading impression that Governments are looking after brain tumours with vast amounts of money for research. It might be "brain research" but it is not necessarily "brain tumour research".

Brain tumour fraud: In a case reminiscent of an earlier USA case, a 42 year-old UK female teaching assistant has been jailed for eighteen months for fraud in claiming to have a terminal brain tumour for which she needed money to pay for treatment. Her ruse was uncovered when a head teacher wrote to a university hospital about the illness and was told she did not have a brain tumour but was suffering from “tension type headaches”.

Boston bombings: We sympathise particularly with our readers in Boston and the USA at what happened in Boston. A USA newspaper reported that Anzor Tsarnaev, the father of the alleged Boston bombers, left Boston for Germany two years ago for treatment of ”brain cancer" and then travelled to Makachkala, the capital of Dagestan in Russia. The US National Brain Tumor Society, which has an office in Watertown, Massachusetts, near Boston, thanked their supporters and wrote: "We were heartbroken to learn that one of our staff members lost a loved one during this terrible course of events. We're doing everything in our power to support our colleague and her family during this difficult time. To the many members of the brain tumor community who offered their thoughts and prayers to the organization, as well as our colleague - we are forever thankful. It was a very difficult week, and your kind words of support provided strength to us all." Dr Johannes Woolf, who is featured on the cover of the 2013 Brain Tumour magazine and works at Tufts Medical Centre in Boston, emailed friends in the immediate aftermath that they were okay but: "One of the bomb victims was a psychology student here. He is dearly beloved by my patients. He and his wife lost a leg. One of the shooting victims today is the son of one of our nurses. They say he will survive. Most of my patients can not come to clinic today, and I am locked in the hospital until the hunt is over." 

IBTA developments: The IBTA’s 2013 edition of Brain Tumour magazine is in the process of distribution to our contacts in 109 countries. If you do not receive a copy in the post in the next few weeks please register your interest here. The IBTA has been allocated a slot in the combined patient advocacy booth (Number 5003) at ASCO (located on the route to the main food hall) during 29 May – 4 June and copies of Brain Tumour magazine will also be available from there. Please visit and introduce yourself to our representatives. Meanwhile, ASCO's Cancer.net editorial board has updated its basic information about astrocytomas in childhood but has tried to utilise the language generally used for other cancers, which doesn't quite fit brain tumours. It says "A tumor can be benign (noncancerous) or Malignant (cancerous, meaning it can spread to other parts of the body)."

Is a malignant primary brain tumour "malignant" because of its capacity to spread to other parts of the body?  We think not. How many brain tumours do spread outside of the CNS? It is described as "malignant" because of its histopathology and molecular structure, and known characteristics and likely future course due to its classification.

Thank you for all your continuing support.


Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569

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IBTA E NEWS MARCH 2013

  • Tuesday, 12 March 2013 17:11

Dear Friend

Cilengitide: The German-based Merck KGaA (Merck Serono) announced on 25 February that the Phase III CENTRIC trial, conducted in partnership with the European Organisation for Research and Treatment of Cancer (EORTC), and which was investigating the integrin inhibitor cilengitide, had failed to meet its primary endpoint of significantly increasing overall survival in Glioma patients. Detailed trial results will be submitted to ASCO 2013.

The CENTRIC  trial involved newly diagnosed glioblastoma with methylated MGMT gene promotor status in which cilengitide was added to Temozolomide and radiation therapy. Results from the accompanying Phase II CORE trial involving unmethylated patients which is ongoing will also be studied. The announcement is a great disappointment to all those involved, including the Company, the EORTC, researchers, clinicians, and particularly the 500 patients who participated in the trial and is a salutary reminder of the difficulties in developing therapies to combat  glioblastoma.

Trabedersen: Around the same time Antisense Pharma, also based in Germany, announced a revised corporate strategy following on from its previously announced early termination of the Phase III study (SAPPHIRE) of trabedersen in glioma. Data analysis of the SAPPHIRE study is expected in the third quarter of 2013. There were serious adverse events (SAE) associated with the local mode of administration of the drug i.e. the convection enhanced delivery (CED) method used in the trial. The company will now concentrate on the drug's systemic intravenous (IV) mode of administration. The Company stated "Future clinical development of TGF-β targeted drugs in glioma is still considered for our promising 'Next generation' TGF-β oligonucleotide program based on the encouraging survival data for anaplastic  astrocytoma from an earlier glioma trial with trabedersen (G004)".

5-ALA fluorescence: In a report freely available in the Journal of Neurosurgery, neurosurgeons from UC San Francisco, led by Mitchel S. Berger, describe how their use of 5-aminolevulinic acid (5-ALA) fluorescence helped them more precisely identify and resect tumour on the pathway between the original and recurrent lesions in a 56-year old man. The fluorescence also helped them to determine that the GBM recurrence was not multicentric, contrary to what a preoperative MRI had indicated. Various trials are taking place in the USA to evaluate the relevance of 5-ALA for achieving greater resections.

Swedish misdiagnosis: An 8-year old girl died after doctors in Southern Sweden failed to diagnose her Brain Tumour, believing her symptoms were related to her ADHD medications. The girl was diagnosed with ADHD in 2007. In 2011 she experienced severe headaches and vomiting which doctors believed were side effects of the medication. She died in January 2012 during an operation that revealed she had been suffering from a haemorrhaging brain tumour. An internal investigation carried out by the Kalmar County Council revealed no single doctor had a clear, overarching picture of the girl's condition.

Armed robber and brain tumour: An armed robber in the UK has had an indefinite jail sentence overturned after judges ruled that he behaved aggressively only because of a brain tumour pressing on his Frontal Lobe. While the indefinite sentence was quashed it was replaced with an 11-year jail term, of which the robber will serve half before qualifying for automatic release. The judges said that they had not reduced the sentence any further because the medical report had not concluded that the robber had not realised he was committing crimes.

Foreign language cancer resources: The ASCO Cancer.Net website lists links to organisations within the USA and other countries that provide cancer information resources in several languages. The IBTA has not explored all these links for the availability of brain tumour-specific information but some of the sources are pleasingly unexpected e.g. Macmillan Cancer Support in the UK provides information in Hindi. The IBTA on its website and in its annual magazine provides information about the country-specific brain tumour support and information bodies (often with non-English language resources) known to us.

Company developments: Guerbet LLC has received a unanimous recommendation from the US Food and Drug Administration's (FDA) Medical Imaging Drugs Advisory Committee that the agency approve a new drug application (NDA) for MRI contrast agent Dotarem for use in adults and children 2 years and older. The agent is used in MRIs of the brain ( Intracranial) and spine ... Lentigen Corporation has announced that the FDA has granted orphan drug status  to P140K methylguanine methyltransferase (MGMT) transduced human CD34 cells for bone marrow protection in the treatment of glioblastoma ... Nuvilex Inc has announced that its subsidiary Medical Marijuana Sciences Inc is focusing on developing treatments against glioblastoma that are based on cannabinoids

Intramedullary spinal cord tumour (IMSCT): Karolis Zienius, a medical student at the University of Edinburgh working with neurologist Dr Robin Grant, has carried out a qualitative analysis on patients who attended the Edinburgh Centre for NeuroOncology (ECNO) for treatment of intramedullary spinal cord tumour (IMSCT). The study points to the fact that, because IMSCT is a rare tumour of the Central Nervous System, patients and their families do not receive enough support or information. He is calling on brain tumour patient organisations to address this gap in service provision. Karolis Zienius may be contacted at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

Research developments: Researchers from the Mayo Clinic (USA) have reported on the efficacy in mouse models of combining avastin and dasatinib, a drug which inhibits Src kinases. They are now carrying out a randomized phase II study of 100 patients using the combination ... Following a quarterly conference call by ImmunoCellular Therapeutics which discussed its brain Tumor immunotherapy product ICT-107, an investment analyst has produced an interesting commentary on the Company's situation and the place of ICT-107 ... Professor Chad A. Mirkin from Northwestern University (USA) is progressing the study of spherical nucleic acids (SNAs) as a means of carrying nucleic acid-based therapeutics to the brain for the treatment of glioblastoma ... Tareq Juratli from Dresden University has reported that accumulation of 2-hydroxygltarate is not a biomarker for Malignant progression in IDH-mutated low grade gliomas ... In a comprehensive overview of recent developments in the analysis and treatment of diffuse Intrinsic Pontine Gliomas (DIPG) published last December, Katherine E. Warren, has called for a continuation of global collaborations and to change our mindset "and not be mired in historical outcomes for children with DIPG, as recent data opens a host of avenues for promising approaches" ... Meanwhile, in a trans-national collaboration scientists in Belgium and the USA have identified through mouse models the potential for blocking placental growth factor (PIGF) in treating medulloblastoma brain tumours, which mostly affect children.

 

Joanne Salcido: The US-based Pediatric Brain Tumor Foundation (PBTF) has named Joanne Salcido vice president of research and family support. According to a media release "Salcido will serve as the foundation's chief mission officer. She will focus on building childhood brain tumor research grant funding and enhancing support services for families of children with brain tumors".

 

New black triangle symbol in Europe: A black inverted triangle '▼' will shortly appear on the package leaflet of certain medicinal products on the EU market, following an Implementing Regulation adopted by the European Commission. This symbol will flag to patients and health care professionals that a medicinal product is subject to additional monitoring, and its accompanying text will encourage them to report any unexpected adverse reaction through national reporting systems.

 
Conferences:
The deadline for early registration and trainee abstract submissions is 30 April for the Montreal International Symposium on Angiogenesis and Metastasis  being held during 12-14 June ... As part of the British Neuroscience Association's (BNA) Festival of Neuroscience in London during 7-10 April, there will be two, two-hour symposiums on brain tumours. The first (9 April, 10.15 to 12.15) is on “Neuro-oncology: Cell Signalling and Therapeutic Targets” and the second (10 April, 14.00 to 16.00) will discuss the topic: “Brain tumours: A complex, challenging and under-recognised area of neuroscience”.

IBTA magazine: The 2013 edition of the IBTA's Brain Tumour magazine is currently with the printers and consists of 120 pages with 54 major articles and interviews and 26 smaller items. The magazine will be posted for free to the 7,000 people on our database for whom we have a postal/land address. If you are not sure if we have your relevant details, click on here to convey them to us. There are approximately 1,500 people on our database for whom we have an email contact address only and to whom we are unable to post a copy of the magazine.

Thank you for all your continuing support.


Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
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'Did you know?' series, 2013 - Day 5, 6, 7

  • Thursday, 07 March 2013 20:37

Each day during UK Brain Tumour Awareness Month we will be sharing brain tumour related facts, statistics and info for you to share with your friends and family - a great and simple way to raise awareness!

Day 5

Day 6

Day 7

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Day 4 - Quote a day for Brain Tumour Awareness Month

  • Monday, 04 March 2013 21:12

Today is the first day of UK Brain Tumour Awareness Month and the start of our 31 days of quotes. We hope these quotes give inspiration and hope to all those battling this disease and their carers, families and friends...

Day 4

Read more...

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