(1 Jan to 7 Nov 2009)
and the
International Brain Tumour Awareness Week
(1 to 7 Nov 2009)
Greater Collaboration Greater Knowledge Greater Hope
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 The 2009 International Brain Tumour Awareness Week commences in days. Are you ready? |
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.
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.
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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
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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.
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)
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.