Organisation: International Brain Tumour Alliance (IBTA)
Mother tongue: English
AREAS OF EXPERTISE:
- Advocacy and awareness raising of the challenges of brain and CNS tumours
- The challenges of rare cancers
- I am a patient advocate representing an international organisation with a very strong European focus, the International Brain Tumour Alliance (IBTA). The IBTA is a not-for-profit organisation registered in England and Wales.
- Founding member of Rare Cancers Europe (formerly the European Action Against Rare Cancers), an ESMO initiative
- Member of the Editorial Board and Section Editor for Patient Affairs, European Association of NeuroOncology online journal (2011 to present)
- Member of the European Cancer Patient Coalition/ECPC (2006 to present)
- Member of the European Cancer Patient Coalition’s Rare Cancers Action Group/ECPC RCAG (2009 to present)
- Founding member of Cancer 52, a UK alliance of nearly 60 organisations working to improve outcomes for patients with rare and less common cancers (2007 to present).
- Member of the Cancer 52 Strategy Group (2008 to present). Co-Director of Cancer 52 (Appointed 2012).
- Member of the British Neuro Oncology Society (BNOS) Rare Brain Tumours Guidelines Group (2009 to 2011)
- Member of Rare Disease UK’s Working Group on Patient Care and Information (2009 to 2011)
- Project Advisory Board Member for the European Patients Academy on Therapeutic Innovation/EUPATI (2011 to present)
- Member of the Healthcare Advisory Board (HAB) for GlaxoSmithKline (2011 to present)
- Ad hoc, one-off projects for various pharmaceutical companies (for example, consulting on a film prepared by one company for patients newly diagnosed with glioblastoma)
- Reviewing patient information sheets (PIS) for various clinical trials (continuing)
- Invited observer at the ESMO Cancer Patient Working Group (2011 to present)
- Member of the Global Council for the Eli Lilly PACE (“Patient Access to Cancer care Excellence”) initiative (appointed 2012)
- Former freelance journalist – research, writing, editing (The IBTA publishes a major magazine each year which is sent to 12,000 recipients in over 106 countries.)
- Wide experience of oral presenting (invited speaker) at major international and national cancer conference plenary, parallel and breakaway sessions. Participation in numerous workshops, media events, information days, media interviews and meetings.
- Frequent contributor to brain tumour and cancer relevant magazines, journals and online publications
- Manning exhibition stands for the IBTA at major medical and cancer conferences such as ASCO, EANO, ECCO/ESMO/ESTRO, BNOS and others.
- Assisted with the coordination of the UK brain tumour charities media campaign regarding the National Institute for Health and Clinical Excellence (NICE) assessment of temozolomide (2005-2006)
OTHER POINTS OF NOTE:
- My son, Colin, was diagnosed with a low grade glioma brain tumour in 2004, at age 24. Following years of neurosurgery, radiotherapy and chemotherapy, he passed away in August, 2011, age 32, after his low grade glioma progressed to a grade 4 glioblastoma multiforme brain tumour. My son Colin’s incredible courage, determination and fortitude is the driving force and inspiration behind my involvement with the International Brain Tumour Alliance.
- Shortly after Colin was diagnosed with a brain tumour, I helped establish the IBTA in May 2005 together with Mr Denis Strangman (the Chair and Co-Director of the IBTA and a resident of Canberra, Australia) who lost his wife to a glioblastoma in 2001.
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