ECPC's member of the month September 2009 is:

KATHY OLIVER - INTERNATIONAL BRAIN TUMOUR ALLIANCE (IBTA)

My Organisation

The International Brain Tumour Alliance (IBTA) is a coalition of support, advocacy and information groups for brain tumour patients and caregivers in different countries and it also includes researchers, scientists, clinicians, nurses and allied healthcare professionals who work in the field of brain tumours. It was established during the conference of the World Federation of Neuro Oncology held at Edinburgh (UK) in May 2005.

Mr Denis Strangman is the IBTA Chair and Co-Director.

The IBTA concentrates on advocacy and awareness-raising and does not accumulate or distribute funds for research or patient support. It believes that is best done by those brain tumour organisations which function at the local or national level in various countries.

In addition to its day-to-day advocacy work, each year the IBTA promotes its two major projects of the International Brain Tumour Awareness Week (1-7 November 2009) and the Walk Around the World for Brain Tumours (1 January to 7 November 2009) in which individuals and groups organise awareness and fund-raising walks in their neighbourhood, with funds directed to local and national brain tumour support and research organisations. The combined walking distances covered in the 2009 World Walk will be contributed to a symbolic global target of circumnavigating the world five times at the Equator, a distance of 200,000 kms. The World Walk raises awareness and unites all those around the globe whose lives have been touched by this devastating disease and who wish to join in a common purpose to improve the situation for these patients and their families.

Additionally, the IBTA encourages the establishment of brain tumour patient and caregiver support groups in countries where they don’t yet exist. We are painfully aware of the fact that 60% of those with brain tumours who live in low and middle income countries cannot even access the standard therapy that we take for granted in the developed world.

Because of its presence at numerous scientific conferences around the globe, the IBTA has also built up strong personal links with many of the world’s leading clinicians and researchers in the brain tumour field.

In 2008, the IBTA’s activities were supported by 157 brain-tumour relevant organisations around the globe. This year, we anticipate that even more organisations will come on board.

Every year 200,000 people worldwide develop a primary malignant brain tumour. Others are affected by so-called benign brain tumours, or brain metastases which have spread from elsewhere in the body. Brain tumours are no respecter of geographic boundaries or age, attacking tiny babies, children, young adults, older people and the elderly with equal ferocity.

The IBTA’s motto is “Greater collaboration – greater knowledge – greater hope”. 

We believe that this cruel disease will only be conquered by a unified, international effort and we try to encourage this approach for all of those who find themselves on this journey.

My story

One cold January night five and a half years ago, and in the eight seconds it took for a neuro-surgeon to say to my husband and me: “I’m so very sorry your son has a brain tumour” I was catapulted into a role that I never ever dreamed I would play – that of a brain tumour advocate.  

We were sitting in a tiny, windowless room in a London hospital when news of my son’s brain tumour was given to us, but we may as well have been sitting on a planet in outer space. My son was then 24 years old. We immediately felt like travellers in a strange and surreal landscape. We didn’t speak the language. We didn’t know how to get from A to B.  But most of all, we were filled with fear and dread of the unknown road ahead.  We had no map, no compass, no anchor to steady us.

When you or someone you love is diagnosed with cancer, it’s an understatement to say your life changes. And when that cancer is something as terrifying as a glioblastoma multiforme brain tumour, an anaplastic astrocytoma or even a so-called “benign” brain tumour, you certainly find yourself in the hinterlands on the cancer map because of the relative rarity of this disease.

But I read everything about brain tumours I could find and sought help from a brain tumour support group. Via the Internet, I quickly became familiar with other brain tumour support organisations in different countries. As a result, in May 2005 I helped establish the International Brain Tumour Alliance and I now work full-time for this organisation as an unpaid Co-Director.

My son is the inspiration behind my continuing involvement with the IBTA. His incredible courage, determination and fortitude is the driving force in my work for the international brain tumour community.

How to contact me

email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

http://www.theibta.org

See also our previous ECPC Members of the Month.