Welcome To Brainwaves NI

/Welcome To Brainwaves NI
Welcome To Brainwaves NI2019-01-07T12:25:53+00:00

Welcome To Brainwaves NI

Brainwaves NI is dedicated to providing support and information to all those affected by a brain tumour: patients, families and carers.

The brain is the most complex organ in the body. It controls our emotions, how we think about life, our reasoning, our logic, it controls our speech, eyesight, mobility and co-ordination; it controls whether we are hungry or thirsty, whether we are hot or cold. It controls our moods and emotions and it controls the way we perceive the world and most importantly how we interact with others.

The startling statistics are;

  • 16,000 people are diagnosed with a brain tumour in the UK every year.
  • There are 120 different brain tumours
  • More children and men under 40 die of a brain tumour than any other cancer.
  • Brain tumours whether benign or malignant; all can be life limiting.
  • Research in the UK is primarily funded by brain tumour charities, that is to say patients, carers and their friends.

In 1992 a group of families came together and within a short time it was evident that families were relieved to meet others undergoing a similar journey.  In 1994 Brainwaves NI received charitable status.  It was very clear from the beginning that Information, Support, Raising Awareness of the Condition and funding research were to be at the core of all we do.  We were the first brain tumour charity in the UK founded to offer these key services.Sadly all of those former patients have since died of their tumour. 

Brainwaves NI is a volunteer lead information and support charity dedicated to helping brain tumour patients and their families during diagnosis, treatment and end of life care. The charity is managed by an annually elected committee of volunteers who are our patients, carers and bereaved families. Each of us has a very personal reason why we are involved with the charity. 

Our website and social media are managed by volunteers and is constantly being updated. Most of our Committee are former brain tumour patients. Our accounts are audited annually and presented to our members at our AGM and we are registered with the Charity Commission in N Ireland. Our charity receives no statutory funding and relies entirely on members and friends of the charity for support. 

All brain tumour patients are given our charity information leaflet on diagnosis. Patients can contact us by phone, through our website, email, twitter, facebook or referral through the Neurosurgery Clinic at the RVH or social workers.

We can advise families preparing for consultants with the medical professionals, help with benefit forms, we can refer them to charities in the UK who advise on seeking second opinions. If we do not have an answer we find one. But often families just want to talk to share their struggles, they are seeking reassurance that they are doing ok and somehow this helps to give them to strength to keep going.

We organise activities which offers social and emotional support. We hold information events, family fun days and facilitate a weekend break with a programme of activities for adults and children whose lives have been affected by a brain tumour. The positive feedback from the families and the help and information they shared with each other was inspirational. These activities may seem frivolous but they are an opportunity for families to come together to share their knowledge, to support one another and offers a relief from the social, emotional and financial isolation families face.

We have organised outreach programmes and social events to enable patients throughout N Ireland to connect and support each other.  Under data protection we do not share family details so we facilitate meetings which enable patients to meet, invariably the notebooks we provide are filled with the names of the families that from that moment become their new friends.

We offer a one financial assistance grant maximum £500.00 which is given to families in extreme need. This may be to help with travel costs to hospital, benefit hardship, or those receiving end of life care.

We have visited patients undergoing treatment who are facing social isolation and connect patients who have similar tumour types to enable them to empathise with each other and share best practice.

All of these activities are funded and organised by the charity. As a charity we work with others. We are a member of the NI Neurological Alliance and have campaigned at Stormont on issues affecting the 45,000 people affected by a neurological condition in the province.

Nationally we have met with other brain tumour charities that collaborate under the name of Brain Tumour Research. Our vision some years ago was to establish a brain tumour research centre of excellence funded to the tune of £1 million pounds a year. Today we as a member of Brain Tumour Research are delighted we have now 4 dedicated brain tumour research centres of excellence in England. We meet with other brain tumour charities to promote our work, raise awareness, get an update on current research and jointly campaign on issues affecting the brain tumour community.

We have lobbied at Westminster on issues such as lack of funding for research. We are invited as a member of the International Brain Tumour Alliance to attend their conferences. This Alliance has representatives from brain tumour charities in over 108 countries.

We had the honour of meeting a family in Dublin who wished to set up a brain tumour charity. We spoke to them about our charity and service we provide and were at the end of a phone or email to advise them. It was an honour to be invited to their charity launch in Dublin as Brain Tumour Ireland..

We have organised and held an annual brain tumour information evening for our patients and their families at Queen’s University with key speakers involved in their care from oncologists, neurosurgeons, scientists and health care professionals who spoke on current research being undertaken at Queen’s.

The information evening includes a visit to the laboratories to meet and speak with researchers  In support for research at The Centre for Cancer Research & Cell Biology, Queen’s University we were delighted that a brain tumour focus group was established which brought together oncologists, neuroscientists, pathologists, research and key scientists. For the first time brain tumours became a serious focus for the key players in the field of research.  We were pleased to be invited to join this important group.

In the last number of years as a volunteer lead charity our members have helped raise a significant amount for the Centre for Cancer Research & Cell Biology at Queen’s University and the scientists and clinicians have acknowledged that without our funding the establishment of a brain tumour research programme into glioma tumours would not have happened at Queen’s. Our vision for the future is that Queen’s University will become a Centre of Excellence for brain tumour research. All of what we have achieved as volunteers would not be possible without the generous support of our fundraisers.

 

Network With Us

Please browse our website &

Check out our new ‘Share & Save’ Resources on our Pinterest

Like us on Facebook or even Follow us on Twitter 

You can even view some of our past support events and activities on our Instagram 

We are always updating the information & content on our website, so if you cannot find something you need, please ask us and we will try to find it for you.

 

To get in Touch today:

Call, or leave a message on: our dedicated support line: 028 9335 3995 or Email: info@brainwaves-ni.org

To learn more about Our Support 

To learn more about Our Charity

To learn more about Our Committee