Today's post is written by Chris Tse, Senior Advisor, International Brain Tumour Alliance.
Brain tumours are regarded as one of the less common cancers, representing just 1.8% of all cancers, yet they often feature at the worse end of statistical measures such as mortality, years of life lost (YLL) and caregiver burden. The road to better outcomes for brain tumour patients is signposted by more funding, more research, and ultimately more effective treatments, but it starts with increased awareness and education.
The International Brain Tumour Awareness Week provides an opportunity for people from around the world to organise or participate in an awareness raising activity for brain tumours, from large scale events such as a conference or fund raising gala to smaller activities such as a tea party, dinner, or support meeting for patients and caregivers.
Leading up to the Week, brain tumour patient organisations are encouraged to issue press releases to their local media contacts, submit articles to the newspaper, post on social media, or arrange radio or TV interviews. Social media users can follow the Week activities on Facebook and Twitter using the hashtag #IBTAWeek.
This is the tenth year that the International Brain Tumour Awareness Week is being held. Every year gives rise to new and creative ideas for awareness-raising activities from all over the world and 2016 is no exception.
On the opening day of the 2016 Week, the Cyprus Brain Tumor Association (CBTA Cyprus) will be holding a major conference in their country, where IBTA chair Kathy Oliver will provide one of the keynote presentations. VUMC Hospital in the Netherlands is featuring the Week in their newsletter to doctors and specialists, and promoting it in conjunction with a book which includes the case of a brain tumour patient.
The Brain Tumour Foundation of Canada will be holding their inaugural national conference in Toronto on the opening day of the Week. They are live streaming the event so that it accessible to as many people as possible. Supporters of the National Brain Tumor Society in the United States will commemorate the Week by wearing orange and grey clothing and sharing their photos online under the hashtag #OrangeandGray.
In India, the Tata Memorial Hospital and the Brain Tumour Foundation of India (BTF) will hold their Annual Art Festival, where children with brain tumours will display their artistic talents. More than 300 families have confirmed their participation.
Supporters in Western Australia will be holding a walk along the banks of Perth’s beautiful Swan River, with the mileage to be contributed to the IBTA’s Walk Around the World for Brain Tumours campaign. Later in the week they are holding a luncheon with a prominent local neuro-oncologist as guest speaker.
Global participation is important. Brain tumours do not discriminate on the basis of age, ethnicity, cultural background, or social or economic status. The Second IBTA World Summit for Brain Tumour Patient Advocates, held last year in Spain, helped shed light on the disparities in healthcare standards for patients in less developed countries compared with the developed nations.
The IBTA has supporting organisations in all corners of the world and this year we printed 13,000 copies of the 2016 edition of our “Brain Tumour” magazine and sent it for free to recipients in 113 countries, as well as distributing it widely at major international neuro-oncology and cancer conferences. An important part of our work is to encourage the establishment of brain tumour patient and caregiver support groups in countries where they don’t currently exist, and in the past year we were delighted to help in the formation of a new organisation in Cameroon, Africa.
As the 2016 International Brain Tumour Awareness Week rolls around, we encourage everyone to participate, in any way possible. Join an event in your home town, or if there isn’t one, hold your own. Tell all your family and friends, call your local talkback radio station or post about it on social media. You can report your Awareness Week activity here - we would love to know about your awareness-raising efforts.