What is the International Brain Tumour Alliance?

Monday, October 15, 2012
By, Kathy Oliver and Denis Strangman
The International Brain Tumour Alliance (IBTA) is a worldwide coalition of brain tumour support, advocacy and information groups in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in this field.

The IBTA’s two full-time Co-Directors are Denis Strangman (Chair, Australia) and Kathy Oliver (United Kingdom). The IBTA’s Directors are unpaid and its advisors are also volunteers.

The IBTA takes an interest in all types of brain tumours, both primary and secondary, and endeavours to focus not only on the adult population, but the paediatric and young adult population too.

One major educational and information publication is published and distributed each year. The IBTA’s 114-page magazine, Brain Tumour, (10,000 copies printed in 2010), has been distributed for free in 83 countries to people in the international brain tumour community. The magazine has received excellent feedback.  Many readers have welcomed the opportunity to learn about how people in other parts of the world are coping with their brain tumour.  Work has begun on a similar publication for 2011.

The IBTA also distributes a monthly electronic E-Newsletter containing a short digest of what has been happening in the brain tumour world during the previous month.  The E-Newsletter is distributed to over 4,000 contacts around the globe including patients, caregivers, medical staff, researchers, scientists and people in industry. The IBTA’s database is probably unique in the brain tumour community because it spans all the various key components, particularly the patients. To register for copies of the E-Newsletter, visit www.theibta.org

The IBTA’s major annual international awareness-raising projects are the International Brain Tumour Awareness Week (to be held from 30 October to 5 November 2011) and the Walk Around the World for Brain Tumours (held from 1 January to 5 November 2011). Both projects are in their fifth year. In 2010, 197 brain tumour-relevant organisations supported these two initiatives. For more information on these events, see the IBTA’s website.

Another current project of the IBTA is to spearhead a worldwide campaign calling for greater support and research into rare and less common cancers, including brain tumours.  The mechanism for this is an Open Letter addressed to the delegates attending a UN Summit on Non-Communicable Diseases in September 2011. It is believed that this important meeting has the potential to compare in significance to the 2001 high level UN Summit on HIV/AIDS, which marked a crucial turning point in the treatment of that disease. Rare cancers, such as brain tumours, need special recognition in connection with the UN Summit.

To read a copy of the UN Summit on Non-Communicable Diseases Open Letter, please visit this webpage (versions of the letter in various languages are available in addition to English):

A list of signatories to date is available here:

In addition to the above projects, Denis and Kathy also attend and exhibit (and sometimes present) at many major neuro-oncology and cancer-related international and regional conferences such as those organised by the Society for Neuro-Oncology (SNO): the European Association of Neuro-Oncology (EANO): American Society of Clinical Oncology (ASCO): the European CanCer Organisation (ECCO): and European Society for Medical Oncology (ESMO).

For further information about the IBTA, please contact Denis Strangman or Kathy Oliver.

 

Kathy Oliver

Co-Director
International Brain Tumour Alliance – IBTA
Denis Strangman
Co-Director
International Brain Tumour Alliance – IBTA

www.theibta.org

  • Anton

    My husband was dgionased with a GBM 4 in Mid Oct 2007, when I was 38wks pregnant with our son. Over the last few months we have experienced a lot and especially with the hormonal flux I’ve been in from delivery and all I find I’m going from extreme happiness to extreme depression in a matter of just hours of the day sometimes even. I found this site because I was desperatley looking for others who have SURVIVED!! (Or as we actually refer to it in our family kicked cancer’s ass My husband and I learned of our problem when he fell in the middle of the street one day taking his lunch from Burger King to his office. He dropped his bag of food from one hand, picked it up confused, dropped it again, then dropped his drink from the opposite hand and then just fell completely at that point. In the middle of the road he crawled with what muscle control he had to the curb as his friend’s came back to help him out and stop traffic for him.Previous to this he was having severe headaches and nausea and his left eye was getting blurry on him. We blamed the first two on hormones from the pregnancy since with our first child he got the same symptoms but just not as severe. The last was confusing.We took him to our local Dr and he found nothing wrong with him and just blamed a new med he took 14 hours earlier for something else but set us up for an MRI just in case. THANK GOD!The MRI showed a baseball sized tumor in his brain and he was admitted immediately basically. Poor little MRI Dr was out of his mind he was so uncomfortable telling a 30 year old man what was in his head with his VERY pregnant wife sitting there wide eyed. He was sweet.My husband is only 30 years old, great health (active duty army soldier actually).Being Army we had several opinions to make sure everything was correct befor he ended up in Tubingen Hospital (we were stationed in Germany on top of all else). On Nov 7, 2007 he had surgery where there was a full resection I guess they call it. All of the mass was removed and he had NO side effects of this surgery and only occasional headaches from the swelling since that date.He has completed his radiation and chemo (with temodal) and is on his first round of temodal since. We get the results from the first MRI since treatment this monday. We are praying for good things like so many of you are here telling us is actually a possibility!! So many other sites are miserable with nothing but death for our end result. Thank you so much for telling your stories. It gives the rest of us such hope.Thank you guys

  • https://www.facebook.com/pages/Tumors-Suck/145877928814836
  •