This three day conference therefore gives us the opportunity to share our own knowledge and experience, and represent the voices of those we support.
In meeting like-minded people from around the world we can exchange thoughts on best practice, developments and new challenges. We also build stronger relationships with organisations and individuals in the brain tumour community, bringing fresh insights and ideas to further inform and enhance our work for the future.
As a charity we aim to shape our support services in response to what patients and carers tell us they need, and we consider that their voice is essential in the development of future support, research and treatment.
Since birth Bristol resident Dan Jefferies has lived with one of the rarest medical conditions on the planet: Wyburn-Mason syndrome, which left him blind in one eye and only partially sighted in the other. Then just as he turned 30, he was also diagnosed with Acromegaly: a very rare tumour growth in the pituitary gland. Six months after that diagnosis he faced life-threatening surgery, made all the more complicated by the Wyburn-Mason syndrome.
There's full information on his website www.memyselfandeye.co.uk and both the eBook or printed version can be purchased here too, or directly through Tangent Books or Amazon.
With his funny, confident and down to earth approach Dan hopes that the story of his incredibly rare conditions may help others who face difficult times in their life. If you want to get in touch with Dan you can contact him via his website, and he is also on Facebook and Twitter.
As a result of the backing given to a recent e-petition, the House of Commons Petitions Committee is soon going to be investigating the subject of funding for brain tumour research within the UK.
The Committee is currently collecting information from organisations, healthcare professionals and the public on this issue, so this is an important opportunity to share your thoughts and get your voice heard.
The deadline for comments is Friday October 30th so don't delay if you wish to contribute.
The forum for placing comments can be accessed directly on the www.parliament.uk site here - Please take the guidance given on the site and be aware that this is a public forum so consider how much personal information you wish to share. Also that the Committee, whilst taking individual experiences into account on the overall issue, cannot have any influence or take action on individual cases.
We sincerely hope that all the feedback and evidence received will impress upon the Committee the need for new action to increase levels of research funding.
Sharing experience is a hugely valuable element of support, and it is also essential to feed into research and help increase understanding and awareness of brain tumours in order to improve support services for the future.
A current study being undertaken at the University of Hull is investigating how people living with a brain tumour view their condition, how they rate their quality of life, and whether the way in which their diagnosis was communicated affects this.
You also buy in the knowledge that every card will be helping to ensure continued help for the growing number of patients and families needing our support.
The group will be run in partnership with Advanced Nurse Practitioners from Southmead Hospital and they, along with our regional Brain Tumour Support Worker, will be there to answer any questions as well as to chat informally.
Please download our flier for further details or contact our Support Sevices Co-ordinator on email@example.com or 01454 422701
Email firstname.lastname@example.org or phone 01454 414355
Hope to see you there!
Before setting out on July 31st she explained:
"Inspired by one of the bravest, most determined, and ambitious young women I have ever known, I have decided to walk from one side of England to the other! Following Wainwright's coast to coast walk, I will be taking two weeks to hike approximately 200 miles solo, in memory of my little cousin Frances."
Frances passed away in 2007 at the age of just 10, having battled for 2 years after being diagnosed with a malignant brain tumour.
"I will be doing this in aid of Brain Tumour Support and Acorns Children's Hospice, two organisations very dear to my family for what they did for us at our time of need, and for what they continue to do every day for those needing their support."
"I finished one of the most challenging things I've ever done. I did walk 192 miles, but this journey doesn't compare to the journey that many families undertake when a loved one is diagnosed with a brain tumour, or a life-threatening condition.
She was with me every step of the way, just as she is with each of us every day. I carried a little star from Rosemary (Frances' mother) on my backpack which symbolised Frances' journey with me; it was my guiding star, and more effective than my compass!"
Claire's inspiring challenge has now raised over £1500 and we are hugely grateful for her generosity and support.
We are recruiting a new member of our Support Services Team, in the role of Brain Tumour Support Worker for Bristol, Somerset and Herefordshire. Offering an holistic approach to support and working both one-to-one and through group meetings, this post offers the opportunity to work within a dedicated and caring team and make a significant difference to the lives of families affected by any type of brain tumour.
Closing date for applications is Friday 11th September 2015, with interviews being held on Friday 18th September. Download further information here and please email Suzie, our Support Services Co-ordinator, for an application form.
Last Friday 7th August, The Kings Arms Hotel in Melksham played host to an inspiring event which truly demonstrated the power of family and friends coming together.
In support of her older brother Ben, April Taylor had her head shaved....and what's more, it was Ben who did the shaving!
Having been diagnosed with a brain tumour and undergoing surgery in 2010, Ben then battled testicular cancer in 2011, successfully coming through surgery and chemotherapy, but he has recently faced the recurrence of the brain tumour with further treatment ahead.
You can read more of Ben and April's story on April's 'Brave the Shave' sponsorship page, which is also still open for donations.
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