WHO WE ARE
We are Yorkshire's Brain Tumour Charity.
We are the region's leading brain tumour charity dedicated to raising funds for life changing research and patient support.
Our vision is clear and simple; we want to cure a devastating disease that affects so many people. Whilst we are working to find a cure, we will provide the best patient and family support network we can.
WHY WE ARE HERE
Around 15 new cases of primary brain tumours are diagnosed each week in Yorkshire. Brain tumours are indiscriminate and can affect anyone, of any age, at any time.
Brain tumours are the biggest cancer killer of children and those aged 40 years and under.
Whilst we are working to find a cure, we will provide the best patient and family support network we can.
- We support dedicated research projects into treating and curing child and adult brain tumours.
- We provide grants and financial assistance to brain tumour patients and their carers to reduce social isolation or help to reduce the burden of financial hardship.
- We arrange for hospital wards, patients and research centres to be provided with all the equipment and items they need. This includes covering the cost of craft and play materials at Leeds on the children's neurological ward, as well as activities to support mental wellbeing and promote fun, like Pizza & Movie Nights.
- We support patients and their loved ones through providing emotional and practical advice. This includes: telephone and email clinics, an out of hours support line, an online chat facility, drop-in clinics, benefits advice and form completion support, support groups (face to face and online) for patients, carers and loved ones, counselling, hypnotherapy, family & peer events and a range of other holistic therapies.
- We support loved ones through their bereavement with our telephone and email clinic, specialist support groups, peer support networks and counselling support.
We bring together the brain tumour community across Yorkshire. We run family events and activities to enable people to share experiences and develop often lifelong support networks with others who really understand.
We provide peer support networks for adult patients, carers and parents across the region.
We know how important it is to be there for people living with, or affected by, a brain tumour. For many, being able to talk about how they are feeling with someone who understands can make all the difference. Our telephone and drop in clinics mean we are there for people when they need us, to chat or ask questions at what can be very difficult and distressing times.
We hear from people who don't recognise their own spouse due to personality changes as a result of their tumour.
We listen to parents whose worlds have been blown apart by their child's diagnosis.
We are there for those who who feel isolated and scared and just want to be able to speak to someone who really "gets it".
Why support us?
Owing to Covid-19, the demand for our support has increased by 200% but our income is down by 61%.
We heard from patients who were told that treatment to extend their life had been cancelled; individuals receiving life-saving treatment who were in lockdown alone, frightened and without support around them.
We need your support to be able to continue to cover the cost of the services we provide to everyone who needs us across the region.
"Maci was a happy healthy 13 year old, until August 2017 when she had the devastating diagnosis of a brain tumour a DIPG. For us as a family to hear that diagnosis was devastating. Since Maci gained her angel wings in October 2017 we have fundraised tirelessly to raise money to help children and families like ours, but to also fund research into childhood DIPG. YBTC have been there to support us as a family and are also funding local research into DIPG and the tissue bank in Leeds. There is no cure for these brain tumours in children and very little funding into research. There has been no change in treatment for the last 40 years!! Can you imagine hearing that if this was your child? We had so many questions and very little hope, we want to change that so no family has to go through what we did." - Maci's Mum
Christine & Alan
“Christine and I were just kids when we met on 3rd December 1977. In 1980 she was diagnosed with a brain tumour, at the age of 18. There were no services for brain tumour patients in Yorkshire at the time, it was just a case of having to get on with it. In 1991 we had to travel all the way to London just to have an MRI scan. How times have changed!
I have been Christine’s carer all our married life.
We got married in 1985 and have stuck together through all the complications that a brain tumour brings and I have always managed my work around looking after her.
It was in the autumn of 2014, when Christine was in hospital, that we first came across YBTC. I joined a walk along the canal in aid of the charity and afterwards they invited us along to their Support Group. It took a lot of courage for Christine to go along to the first meeting, but we have never looked back and our friends at YBTC are now like an extended family and a great support to us.
Our daughter, Becky, is also a part of the YBTC family and is one of the Shop Supervisors at their charity shop at 31 Otley Road, Headingley.
For us as a family, 2020 has been really difficult. Christine suffered a stroke in January and was in hospital for several weeks. As the pandemic was getting closer, visiting times were getting less and less and Becky and I were on lockdown at home with Christine in hospital.
Christine came home in late March, but has been left with even more difficulties since the stroke. In some respects lockdown has been a blessing for us, as Christine now needs me more than ever.” - Alan
You can read more personal stories and see videos from the links here:
You can find out more about our work on our website: YBTC website