IBTA e-News – 2009

By 15th December 2009e-News Archive

7 December 2009: A new E-News has been distributed. Go to the box at the left and click on the link for the December 2009 Newsletter. It contains reports on the SNO, COSA and other conferences. Also, we have exceeded the target of five times around the World at the Equator (200,000 kms) in the Walk Around the World for Brain Tumours. Well done!

3 November 2009: IBTA Chair Denis Strangman attended the International Symposium of Pediatric Neuro-oncology for the 50th Anniversary of the Taipei Veterans General Hospital and the Annual Scientific Meeting of the Chinese Medical Association during October 30 - November 1 at which he gave a presentation and held a display. Here is a photo of Denis in front of the IBTA display booth with staff and members of the Childhood Brain Tumor Association of Taiwan who also had a display. L-R James; Bennet Lu (CEO); Amy; Ricky; Joy Huang (Social Worker).

During 18-27 October IBTA Co-Director Kathy Oliver travelled to three countries for the following events: (1) a media education and advisory day on glioblastoma multiforme at the Neurosurgical Department, Hospital of the University of Munich, Germany where she gave a presentation on the brain tumour patient and caregiver perspective; (2) the joint meeting of the Society for Neuro-Oncology (SNO) and the AANS/CNS Section on Tumors in New Orleans, USA - where these two societies came together for the first time ever to hold a shared meeting at which was presented the latest developments in neuro-oncology and tumour surgery and (3) the EPPOSI (European Platform for Patients' Organisations, Science and Industry) 10th Workshop on Partnering for Rare Disease Therapy Development which was held in the Belgian Federal Parliament, Brussels, Belgium. Kathy gave a presentation at this meeting on the brain tumour patient and caregiver perspective of "HTA (Health Technology Assessment) and access to promising, new therapies for patients with rare cancers".

4 October 2009: The IBTA had a display booth at the combined ESMO 34 and ECCO 15 Multidisciplinary Congress held at Berlin during 20-24 September, at which copies of the IBTA book about the First Glioma Operation were distributed to participants and IBTA Co-Director Kathy Oliver spoke at the associated Patient Advocacy Track.

3 September 2009: Brain tumour survivors will be among those featured in the European Partnership for Action Against Cancer which will be launched in Brussels on 29 September. Click here to read a joint media statement from the IBTA and the European Partnership.

27 August 2009: Media release by the IBTA on the occasion of the death of Senator Kennedy from a brain tumour. Click here.

26 July 2009:
A new edition of the IBTA E-News has been distributed. Go to the box at the left and click on the July 2009 Newsletter link.

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.

4 June 2009: 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.

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.

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