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Walk Around the World for Brain Tumours
(1 Jan to 7 Nov 2009)
and the

International Brain Tumour Awareness Week
(1 to 7 Nov 2009)

Greater Collaboration     Greater Knowledge       Greater Hope

www.theibta.org


















The IBTA has published a 62-page booklet:

 "The First Documented, Modern-Day Brain Tumour Surgery for a Glioma"

It tells the story of Rickman John Godlee's historic operation in 1884, whose 125th anniversary will be commemorated in 2009.

Some comments from those who have read it:

"Brilliant" (Neuro-oncologist, UK)

"A remarkable historical booklet" (Neuro-oncologist, USA)

"Fascinating ... I really enjoyed it" (Neurosurgeon, Australia)



£5.00 GBP (or the equivalent in your currency)
 
includes postage and handling


walk

The 2009 International Brain Tumour Awareness Week commences in days. Are you ready?


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Click on the image below to download a much larger PDF file (7.9 Mb) of our main 2009 Awareness Week notice board poster.

The IBTA welcomes donations and grants in support of its work. If you would like to make a donation, please click on the link below  


The International Brain Tumour Alliance (IBTA) was established during the conference of the World Federation of Neuro Oncology held at Edinburgh (UK) in May 2005.

It seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.

formation

Some of the fifty people from eleven countries who attended the inaugural meeting of the IBTA held on 7 May 2005 in Edinburgh. They include people with a brain tumour, their carers, scientists, nurses, health professionals, researchers, and former carers.
Latest news and events
27 June 2009: The IBTA is associated with the ESMO (European Society for Medical Oncology) European Action Against Rare Cancers Campaign. Click here to access a webpage to sign the call.

 

8 June 2009:
The IBTA had successful displays at the conjoint 3rd Quadrennial Meeting of the World Federation of Neuro-Oncology and the 6th meeting of the Asian Society for Neuro-Oncology held at Yokohama, Japan, during 11-14 May, and also at the American Society of Clinical Oncology (ASCO) meeting in Orlando, Florida, held during 29 May - 2 June. 300 copies of the IBTA's new booklet about the first glioma operation were distributed at WFNO and 200 copies at ASCO. A report of the WFNO meeting can be accessed here. The IBTA was assisted at its display at WFNO by members of the Japan Brain Tumour Alliance (JBTA), some of whom are shown below. On 24 May the IBTA distributed a further E-News to its 3,500 member contact list. The E-News can be accessed here.



Denis Strangman (Left, Chair IBTA), Mr Hisato Tagawa (Co-Chair, JBTA), Takako Iwasaki (JBTA), Masako Itaya (JBTA).



IBTA Co-Director Kathy Oliver (Left) talks with Dr Marta Penas-Prado (Spain) at the IBTA information booth at ASCO.

On 4 June Professor Chris O'Brien, an internationally-known head and neck surgeon from Australia died, following the diagnosis of a glioblastoma in 2006. He received the IBTA E-News regularly and often conveyed his thanks. Professor O'Brien was a strong advocate for the patient viewpoint. Brain Tumour Alliance Australia distributed a media release following his death.


20 May 2009:
The IBTA was very sorry to learn of the death on 1 May of our valued supporter and brain tumour advocate from Lithuania Ingrida Blazyte Byciuviene. Please visit this webpage for a tribute to Ingrida. At one stage she made this observation: “I never blamed anyone and anything for my illness. Opposite, I’m grateful for it as it made me think a lot and changed me completely…I felt that I was seeking for some untrue values, sometimes I was angry with people for nothing, I used to judge them for one or another deed, while now I am a totally different person."

29 April 2009: The latest copy of the IBTA E-News has been released and can be accessed here. It includes links to an 11-page report on last month's "Trends In Central Nervous System Malignancies" conference in Budapest, plus other items of interest.


Kathy Oliver (Co-Director) and Denis Strangman (Chair) make final amendments to the booklet about Rickman Godlee (see E-News)

The IBTA display table at the Budapest Conference. Our main poster was translated into the Hungarian language and copies distributed to the Hungarian participants

16 February 2009:The IBTA and UICC (International Union Against Cancer) have issued a joint statement to mark International Childhood Cancer Day (15 February), in which the UICC Executive Director (Isabel Mortara) says "There is a real need to promote a wider public understanding of the challenges faced by brain tumour patients, their families and their caregivers". The full media release can be downloaded from the website as a PDF file.

The following are various web links referred to in the 16 February edition of the IBTA E-News: IBTA/UICC joint statement on childhood brain tumours - http://www.theibta.org/IBTAUICCPressStatement5.pdf  US SEER statistics comparing childhood (0-14) CNS and leukaemia mortality figures - http://www.theibta.org/BrainLeukaemiaUSA.pdf EORTC/EANO Conference on Trends in Central Nervous System Malignancies - http://www.ecco-org.eu/Conferences-and-Events/EORTC-EANO-2009/page.aspx/1187 ASCO Annual Meeting, Florida - http://www.asco.org/ASCO/Meetings/ASCO+Annual+Meeting  WFNO Conference Japan - http://wfno2009.umin.ne.jp/index.html Rarecare listing: http://www.rarecare.eu/rarecancers/rarecancers.asp Contact Gemma Gatta - Gemma.Gatta@istitutotumori.mi.it  Virtual Brain Tumor Board http://www.methodisthealth.org/methodist/Healthcare+Services/Areas+of+Excellence/
Neuroscience+Institute/Virtual+Brain+Tumor+Board  Jonathan Finlay presentation at St Jude - http://www.theibta.org/FinlayStJude.pdf


17 January 2009:
 The IBTA wrote to the International Union Against Cancer (UICC) asking it to acknowledge the needs of brain tumour patients, particularly paediatric brain tumour patients. Both organisations are now working towards a joint media statement on the subject. The IBTA letter attracted support from more than 100 specialists, including some of the world's leading neuro-oncologists, radiation oncologists and neurosurgeons. It was also supported by leaders of more than 60 brain tumour and cancer not for profit charities.
Supporting organisations, to date, for the IBTA's 2008 Awareness Week and World Walk:

Adult Ependymoma Online Brain Tumor Support Group . Alis Dream . American Brain Tumor Association (ABTA) . Andreas Gift . Andrew McCartney Trust Fund . Angels Among Us Walk . Astro Fund Low Grade Glioma Support (LGGS) . Australian Genomics and Clinical Outcomes of High Grade Glioma (AGOG) . Belgian Association for
Neuro-Oncology (BANO) . Brain and Spine Tumor Centre/Cardinal Santos Medical Center (Phillipines) . b.r.a.i.n.child . BrainLife . Brain Tumour Action (BTA) . Brain Tumour Alliance Australia (BTAA) . Brain Tumor Resource & Information Network (B.R.A.I.N.) . Brain Tumour Foundation of Canada . Brain Tumour Foundation of India . Brain Tumour Research . Brain Tumour Research Campaign (BTRC) . Brain Tumour UK . Brainstrust . British Journal of Neuroscience Nursing (BJNN) . British Neuro-Oncology Society (BNOS) . BT Buddies . Cancer Research and Communications Organization (Kenya) . Central Brain Tumor Registry of the United States (CBTRUS) . Charles Warren Brain Tumor Awareness Foundation . Children's Cancer Association of Japan . Diana Ford Trust . Department of Neurosurgery Hopital Erasme, Brussels, Belgium . Ed Evans Foundation . European Organisation for Research and Treatment of Cancer Brain Tumour Group (EORTC Brain Tumour Group) . Glio-Blastoff 5K . Glioblastome Association Michele Esnault (GFME) . Gray Matters Foundation . Gruppo Italiano Cooperativo di Neuro-Oncologia (GICNO) . Il Fondo di Gio ONLUS . Japan Brain Tumor Alliance (JBTA) . Kartu Lengviau (Lithuania) . Kelly Heinz-Grundner Foundation Inc . Levis Star . The Liberty Rose Trust . Meagans Walk (Creating a Circle of Hope) . Medical University of Vienna, Neurooncology Team . Meningioma UK . Michael Quinlan Brain Tumor Foundation . Monmouth and Ocean County Brain Tumor Support Group Inc . National Brain Tumor Society (NBTS) . Nick Gonzalez Foundation for Brain Tumor Research . Pakistan Society of Clinical Oncology (PSCO) . Philippine Alliance for Brain and Spine Tumors Inc . ROC On! (Run over Cancer) . Samantha Dickson Brain Tumour Trust (SDBTT) . Society for Neuro-Oncology (SNO) . Souls and Shadows Foundation . STOPhersentumoren.nl . Students Supporting Brain Tumor Research (SSBTR) . Talis Fund . Team John Geyer . Teenage Cancer Trust (UK) . TUCCA, Associacao para Criancas Adolescentes com Cancer (Brasil) . UConn Alumni Association . Viennese Scout Group 42 . Western North Carolina Brain Tumor Support Group (WNCBTSG) . Zimbabwe Brain Tumour Association (ZBTA)

Organisations wishing to be listed as supporters of the IBTA's 2009 World Walk and the  International Brain Tumour Awareness Week (1-7 November 2009) should contact: chair@theibta.org or kathy@theibta.org

Please note: for your organisation or group to be a "supporter" of the Week and Walk, the IBTA requires no financial commitment or fee to be paid to us by you.  All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters. Thank you.



sponsors

Notes: The intention of the founding meeting was that we seek to represent all tumours of the central nervous system. As is the practice in the scientific literature and clinical use, we use the words "brain tumour", not "brain cancer".

Copyright 2007-2009 ©  The International Brain Tumour Alliance [IBTA]. All Rights Reserved.

The IBTA is a not-for-profit, limited liability company incorporated in England and Wales, Company Number: 6031485. The registered address is: c/o Roxburghe House, 273-287 Regent Street, London W1B 2AD, UK. Correspondence should be addressed to the Secretary (details on the Contacts page) not to the registered company address. Click here for the Contacts page.


The IBTA protects users' privacy under the terms of the UK Data Protection Act 1998 and has registered as data controllers with the Information Commissioner's Office.