Brave Jedi Ashley had been battling Neuroblastoma since 2008. He fought so hard and still managed to keep smiling. Ash was the first recipient of our Monkey Buddies kit (see image left of Ash with his Monkey, Satan!) when he relapsed and was missing being at school with all his friends. After treatment for a brain tumour (as part of his neuroblastoma) his radiotherapy mask became a part of our Behind the Mask exhibition to help raise awareness of brain tumours and highlight his story.

Ashleys loving parents, Clair and Jamie, never gave up hope, fighting with and for Ash every step of the way.

In the early hours of this morning Ashley passed away at the age of 7 :-(

We would like you to join us in thinking and/or praying for Ash, his Mummy, Daddy, little sister and all their family and friends at this very difficult time.

 

 

As part of Childhood Cancer Awareness month (September), Diane from The Maria Watt Foundation, and Natalya from BT Buddies, have decided to join forces to stage a brand new event – Candles of Courage.

The aim of Candles of Courage is to recognise the 4,000 children and young people who will receive the devastating news that a diagnosis of Cancer brings.

 

The event also aims to recognise the courage of those children and young people whilst remembering the many young lives already lost to this disease.

 

4,000 candles will be displayed in the shape of the worldwide symbol for Childhood Cancer, the Gold Ribbon. The candles will be lit and will form a Gold Ribbon Illumination.

For more information visit:

www.candlesofcourage.org.uk

Following the announcement earlier this year that Dr. Ajithkumar, Consultant Oncologist at the Norfolk and Norwich University Hospital (NNUH), had joined the BT Buddies Advisory Team, we are now pleased to welcome two more members from NNUH.

Russell Fitchett (see image right), Superintendent Radiographer, and Debbie Pilling, Radiotherapist, will be reviewing the information BT Buddies provides on radiotherapy. They will l be writing articles to be included in our patient pathway in the hopes that we can 'plug' some of the gaps in information about how radiotherapy is planned and the types of side effects patients may have during, and after radiotherapy.

And, finally, Russell and Debbie will be answering your questions about anything from the mould room process to receiving your last dose of radiotherapy and beyond in a Q&A session set for early September 2010. If you have a question for Russell or Debbie, please email us and we will let you know as soon as the Q&A's are placed on our website.

(Please note: Debbie and Russell will only answer general questions about the radiotherapy process and possible side effects. Any information they provide is intended for your general knowledge only and is not a substitute for medical advice or treatment for brain tumours or any other medical conditions. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your doctors.)

Off on your holidays? Or just fancy something to read once the kids have gone to bed?!

Thanks to a kind donation from one of our supporters, we have now got various books for sale in our eBay store.

CLICK HERE TO CHECK THEM OUT!

Professor O’Riordan, OBE – Patron of BT Buddies

In March 2010, during our 'Behind the Mask' exhibition in Norwich for Brain Tumour Awareness month, we were privileged to meet the then Sheriff of Norwich, Professor Tim O'Riordan.

Tim came along to talk to us about the work BT Buddies does and to view our 'Behind the Mask' exhibition. During his tour of the exhibition he explained to us that he had, had a secretary whose husband passed away from a brain tumour so he was really keen to look at the masks, read the stories and find out a bit more about brain tumours.

Since that first meeting, Tim has kept in contact with us and we were extremely honoured when he recently agreed to become our first Patron.

On accepting this role Tim said "BT Buddies is a great charity. All too often brain tumours are not diagnosed early enough to save lives. To have a charity which both supports everyone who faces brain tumours, whether a patient or a carer, and which gives everyone the courage and resolve to deal with the disease is a huge blessing. BT Buddies will always have my full support." Although Tim's background is in Environmental Sciences, he has many contacts in the business world, and we are very glad to have him onboard!

As we continue to develop relationships with BT Buddies Advisory Team members from the Norfolk and Norwich University Hospital, and, begin to think about the services we can provide in the local area, we feel Tim will be a great supporter of our work and we look forward to what this partnership may bring.

Tim is already helping us to raise awareness of brain tumours by wearing his Pedometer from today, for our August Pedometer-a-thon. We wish him all and everyone else taking part all the best and hope together we can clock up quite a few miles towards our 5,581 mile target (distance around the coast of England)!

To find out more about Tim's background please click here.

 

 

 

In 2 hours and 30 minutes we will be putting on our Pedometers and starting our step count for the 'Walk around the World for Brain Tumours'!

The event will run through out August and we'd really like it if you'd join us and help us to reach our very ambitious target!

5,581 miles in 31 days

There is only one small optional 'catch' and that is we'd love it if you could hand out 10 small cards (business card size) with the image on the left along with a link to find out more about our pedometer-a-thon.

To find out more please CLICK HERE where you can sign up (free), buy a pedometer if you need one (£1.50...and if you buy one from us £3.00 goes to BT Buddies!) and pledge how far you hope to walk...

That's all there  is to it, if you can take a photo of you wearing your pedometer during August please send them into us at info@btbuddies.org.uk

Don't have a pedometer? Don't worry! You can still take part in our month of measuring your 'steps' by visiting www.mapmyrun.com and putting in your start and end points for any walks you do during August. Once you have calculated the distance you have walked you can go over to our pledge page and donate the distance (you must register and be logged in to pledge a completed distance - this page will go live on 1st August 2010).

BT Buddies would like to say a BIG THANK YOU and congratulations to Orla Graham, who ran in this years Dublin Flora Women's Mini Marathon in memory of our BT Buddy, Chris Bradley.

Despite the rather wet day, Orla ran the 10k alongside 40,396 other women through the streets of Dublin and raised a fantastic €325 (£270) for BT Buddies!!

Orla became aware of the work BT Buddies does after her good friend, Catherine, lost her brother, Chris, in April this year to a Glioblastoma Multiforme. You can read more about Chris here.

Funds raised in memory of Chris will be used to help 16 - 35 years old living with a brain tumour, lead as normal a life as possible, for as long as possible.

Myself and the BT Buddies team are very grateful to Orla for choosing to fundraise for us - You're a Star!

 

START: Molesey Lock, Surrey (near Hampton Court Palace)

 

DUCKS RELEASED AT: 13:30

 

FINISH: The Sherriff Boat Club, Albany Reach (next to The Albany Pub)

 

BT Buddies will be holding a walk along the route, meeting close to the start (venue to be announced) at 13:00 on the day of the race. If you'd like to walk with us please email Natalya This e-mail address is being protected from spambots. You need JavaScript enabled to view it with your details and we'll send you further information.

 

If you have any questions or require any further information please email us This e-mail address is being protected from spambots. You need JavaScript enabled to view it and we'll get back to you as soon as we can.

 

 

Sponsor your duck now and help to raise vital funds for BT Buddies!

Well, we finally have the new chat up and running! So, this week we are hoping for a trouble free meeting! :) Thanks to all who have attended so far, it's been great getting to know you all and seeing the support we all have for one another.

Details of our next meeting:

DATE: Wednesday 16th June 2010

TIME: 6pm - 8pm We have set the time to two hours but the chatroom will remain open until 9pm for those who may not be able to make it earlier in the evening.

PLACE: http://www.btbuddies.org.uk/chat (This link will NOT work until 6pm Wednesday evening)

Please note the chat facility will only be open during group meetings. The rest of the time this page will show details of the online support group and our future meeting dates, times and speakers.

DETAILS: The group is open to anyone affected in anyway by a brain tumour. Patients, carers, husbands, wives, daughters, sons, brothers, sisters, other family members, friends, medical professionals, charity representatives and anyone else I may have forgotten! If at some stage it would be useful to hold separate meetings for certain groups such as carers, then we'll be happy to do that...lets see how things go at this first one, first!

We will have a medical professional linked to neuro-oncology at 1 meeting a month.

First and foremost this is a support group for you, so we welcome your input at any time on any aspect of how the group is run.

Please invite anyone you think may benefit from the group, it is open all tumour types and for anyone affected in anyway by a brain tumour. We look forward to 'seeing' you all on Wednesday!

And finally, one of the group moderators, Steve, has come up with a little motto for our group that we'd really like to share:

Thanks Steve!

 

The International Charter of Rights for Young People with Cancer

www.cancercharter.org

We are neither paediatrics nor geriatrics; we have unique needs - medically, developmentally, socially, and economically.

We have the right to have these unique needs recognised.

Like all age groups, we deserve to have our dignity, our beliefs, our privacy and our personal values respected.

Regardless of financial, familial, ethnic or other background, access to quality cancer care and age-appropriate support is a right, not a privilege.

Young people with cancer have the right to…

• Receive education about cancer and its prevention including early detection.

• Be taken seriously when seeking medical attention and receive the earliest possible diagnosis and speedy referral for suspected cancer.

• Have access to suitably qualified multi-disciplinary medical specialists with significant experience in treating cancer in this age group.

• Information about and reasonable access to clinical trials and treatment that has been clinically trialled with people in their age group.
• Receive age-appropriate support including, but not limited to, psychosocial, community and palliative support services.

• Empowerment in making decisions supported by full and detailed explanation of all treatment options and long-term effects of the disease enabling them to actively influence their care.

• Fertility preservation, as well as information and counseling concerning short-term and long-term effects of cancer and treatment which affect fertility.

• Have access to specialised treatment and services in age-appropriate facilities alongside their peers.

• Financial and practical support to minimise the burden of the disease during treatment.

• Elimination of all forms of discrimination, during and beyond treatment, in education, vocation and insurance, or in the community.

Together we can make a difference

SIGN THE CHARTER HERE TODAY

Press release 07/06/2010 from the Teenage Cancer Trust:

The sixth International Conference on Teenage and Young Adult Medicine kicked off today with the launch of a global campaign to protect the rights of young people with cancer and establish them as a distinct medical group. Teenage Cancer Trust’s longstanding celebrity patron, The Who’s Roger Daltrey CBE, encouraged people across the globe to support the International Charter of Rights for Young People with Cancer by signing online at www.cancercharter.org

In the UK, six people aged 13-24, are diagnosed with cancer every day, in the US that figure is nearly 200 per day. Teenage Cancer Trust studies have shown in the UK that young people revisit GPs an average of 5 times before symptoms are recognised or taken seriously. Globally, teenagers also miss out on vital clinical trials by research systems arranged around age, leaving them forgotten in the middle of children and adult age groups and lagging behind in survival rates. The international community also agrees these patients face a lack of resources such as psychosocial therapy and fertility preservation.

Set up by five cancer charities across the world, Teenage Cancer Trust in the UK, CanTeen Australia, CanTeen New Zealand, and LIVESTRONG and SeventyK in the USA, the Charter is a global initiative recognising teenagers and young adults have specific needs that differentiate them from children and adult medicine. The charities believe these differences deserve to be acknowledged by the medical world, and identify ten key rights they want to see awarded to young people diagnosed with cancer worldwide.

Roger Daltrey CBE, Teenage Cancer Trust Patron said, “I’ve been working with Teenage Cancer Trust for 10 years and we don’t just talk about change, we make it happen. Quality cancer care for this age group should be a right and not a privilege. For a teenager, dealing with cancer is frightening enough but being taken away from your life and friends makes it more frightening. This situation has to change. We believe teenagers with cancer shouldn’t have to stop being teenagers. Thanks to Teenage Cancer Trust, Britain leads the world in the treatment of teenagers with cancer. Now we need the world to catch up.”

Hannah Merridale, 25, was diagnosed with a Carcinoid Tumour in her right lung at 18 after spending over five years going back and forth to her GP. She said, “I started feeling really breathless when I was 13, but my GP said it was asthma. It got worse to the point where I had a constant stabbing pain in my chest yet they still told me it was just asthma. Five years later I got really ill and spent four months visiting my doctor every week until he eventually gave in to my pestering and sent me for a chest x-ray. The x-ray showed that my right lung had collapsed, and by the time I saw a consultant the collapsed part had died. All this time I had a large tumour growing on my lung, and as a result I’ve had two thirds of it removed.”

Professor Mike Richards, UK National Cancer Director, said, “I absolutely agree that teenagers and young adults should be recognised as a distinct medical group with specific needs. Teenagers and young adults fall between paediatric and adult medicine and because of this are under represented in medicine and research. Early diagnosis and detection is vital for improving survival rates for all age groups, so I whole heartedly support this Charter of Rights for young people with cancer in raising awareness of the issues of cancer and cancer care for young people across the world.”

Teenage Cancer Trust leads the world in the treatment of teenagers with cancer, building state-of-the-art units for this age group in UK NHS hospitals. In the US, SeventyK and LIVESTRONG are committed to advocacy, outreach and education of the issues that affect many young people, as defined by the National Cancer Institute. Down under, CanTeen in Australia and CanTeen in New Zealand have become the largest supporter and service provider for young people with cancer.

Together we can make a difference

SIGN THE CHARTER HERE TODAY

For those of you that didn't get the message about tonights chat, due to Natalya's attendance at the Teenage Cancer Trust conference this week the weekly chat group has moved to Thursday 10th June 2010, instead of Wednesday 9th June...sorry folks.

Details of our next meeting:

DATE: Thursday 10th June 2010

TIME: 6pm - 8pm We have set the time to two hours but the chatroom will remain open until 9pm for those who may not be able to make it earlier in the evening.

PLACE: http://www.btbuddies.org.uk/chat (This link will NOT work until 6pm Wednesday evening)

Please note the chat facility will only be open during group meetings. The rest of the time this page will show details of the online support group and our future meeting dates, times and speakers.

DETAILS: The group is open to anyone affected in anyway by a brain tumour. Patients, carers, husbands, wives, daughters, sons, brothers, sisters, other family members, friends, medical professionals, charity representatives and anyone else I may have forgotten! If at some stage it would be useful to hold separate meetings for certain groups such as carers, then we'll be happy to do that...lets see how things go at this first one, first!

We will have a medical professional linked to neuro-oncology at 1 meeting a month.

First and foremost this is a support group for you, so we welcome your input at any time on any aspect of how the group is run.

If you'd like to become a member of the BT Buddies online support group please email us and let us know you are interested so we can get an idea of numbers and for instructions on how to login to the chat.

We look forward to 'seeing' you on Thursday!

Orla Graham (left) and Catherine Bradley (Orla says sorry Cat!)

At 3pm on Monday 7th June BT Buddies supporter, Orla Graham, will be setting off on the 10k Flora Women's Mini Marathon in Dublin.

A few weeks ago Orla contacted us to let us know she wanted to take part in this event for a very special reason.

"I want to support BT Buddies as a thank you for all the amazing support they have given to my friend Catherine, Chris and their family over the course of his illness. Although I never got to meet Chris, I knew that he was a fantastic and very brave person through everything Catherine told me about him and by reading his blog. When I attended the funeral and heard Carole talking about BT Buddies and everything they had done I just wanted to do something small for them as I felt they were a very deserving cause."

We at BT Buddies, and Chris' family, are so grateful to Orla for wanting to run in Chris' memory and raise vital funds to help us continue providing information, support and hope to brain tumour patients, their families, carers and friends.

If you would like to sponsor Orla you can do so in any of the following ways:

click below To make a donation online

 

If you have any problems with the link above please email natalya@btbuddies.org.uk or contact Orla direct at graham_orla@hotmail.com

To send a donation by cheque please make it payable to “BT Buddies” and send it to:

Click here to take survey

Once you have completed the survey please pass the link on to as many people as you can - the more people who take part, the more MP's we will be able to contact.

Thank you!

Registered Charity No. 1135842

Our BIG News - May 10th was a very special day for BT Buddies. After almost 5 months we finally received Registered Charitable Status! You can find us here on the Charity Commission website and we are Registered Charity No. 1135842. Watch this space for an announcement on when we become registered with Justgiving (within the next 24 hours)!

I spent most of 2009 telling anyone who asked that I never wanted to become a charity, the 'politics' involved had completely put me off. But, looking at it from a business point of view towards the end of 2009 we decided it made sense.

The BT Buddies team put together our governing document and decided on 3 objectives. These are:

1. To provide information, support and assistance directly or indirectly to people affected by a primary or secondary brain tumour.

2. To advance the education of the public, in particular but not exclusively, patients, their families, carers and medical professionals about all areas relating to primary and secondary brain tumours.

3. Any other charitable purpose for the benefit of children with brain tumours, childhood cancer and similar conditions as the trustees see fit.

BT Buddies is staffed entirely by volunteers so no funds raised will be going to pay things like salaries or other staffing related costs. Myself and the trustees all agree that all funds raised for BT Buddies should go towards making sure we fulfill the above objectives.

Until now, Andrew has found talking about the work we do and the reason we do it quite difficult, however, he felt now was the time to say a little something about the last 3 and a half years and what becoming a charity means to him:

In November 2006, when Rose passed away, my world was turned upside down and it wasn't until early 2007 when Natalya and I spoke about the A4 binders she gave me with all the information she had gathered about High Grade Brain Tumours (specifically GBM IV's). I had no need for them, and to be perfectly honest, I never wanted to open one of them again.

However, Natalya, who had become ill herself at this point, said that there must be more people spending hours online trying to find a little help/guidance during their 'battle' with this life taker and, as she had gathered a lot of information by then, she suggested creating a website that pulls all this information found around the web into a single portal where people can learn more about HG Brain Tumours.

BTBuddies was born, it took many long months for Natalya to create the site and as the months past the information provided on the site grew. By March 2009 Natalya was happy enough to launch BTBuddies to the world and in the first 2 months it won awards for the information and help it provided. When we received the HONcode stamp of approval we knew that the site was providing the correct information in the right way. By mid 2009 and after much talk we decided that rather than continue fundraising for Clatterbridge Hospital we would apply for Charity Registration ourselves so we would control exactly where funds were spent.

We (Natalya) faced many hurdles during the application but finally on the 10th of May 2010 Natalya got the letter with our Charity Registration number.

This little number opens so many doors for BTBuddies, not only for the recognition and the ability to join Justgiving but, it is proof that the years of work Natalya has put into this project are helping people both today and in the future.

My Rose might have passed but BTBuddies has become her legacy and I thank my best friend, Natalya, for all her work during her own poor health.

Andrew F/O Rose

On a personal level I (Natalya) would also like to take this opportunity to thank some very special people and organisations.

Firstly, to Carl, Dawn and all at the Liberty Rose Trust, you are all stars and we are so grateful for all your help with our charity application and especially to Carl, who has listened to my ramblings a few times and never once moaned - thank you!

Secondly, to all those people that have raised funds for BT Buddies this past year, we couldn't have achieved charitable status without your support. Thank you for not just raising funds but for helping to raise awareness of brain tumours too.

Thirdly, to Carol from Andrea's Gift – thank you so much for being such a big support to me since the launch of BT Buddies both professionally and personally and I am very thankful for your friendship.

To special friends I have made along the way, B'Lynn, Gilly, Carole – I am always here for you and will never forget the losses that have brought us together xxx

To Kathy Oliver from The IBTA, Helen Bulbeck from Brainstrust, Maureen Kelly from The Neurosupport Centre, Niki from The Ethan Perkin's Trust and anyone else I have forgotten to mention – thank you all for your help and support .

And it wouldn't be right if, whilst sharing our wonderful news about becoming a charity, I didn't take a moment to reflect on why I started BT Buddies.. .

I began researching this disease on Andrew's behalf when Rose was diagnosed and continued to do so throughout her short battle. Sadly, Rose passed away before much of the information could be of any use, however, I wanted to make sure that in future others wouldn't have to search the world for more than basic information on high grade brain tumours. This website and the work that we do is all done in memory of Rose and, we will never give up providing vital information and support to those faced with a similar diagnosis.

Also, to Stefan, Mike, Dennis, Chris and all those we have known and lost since we started this journey - you will never be forgotten and all of you continue to be an inspiration to me on a daily basis.

New member joins the BT Buddies Advisory Team -We are very pleased to welcome Norfolk and Norwich University Hospital Oncologist, Dr. Ajithkumar, to our advisory team. Dr Ajithkumar works closely with the neuro-oncology team at Addenbrookes Hospital and will be helping us make sure all our treatment information is up to date and accurate as well as putting together a new section on what happens if or when a persons tumour recurs. We are very grateful to Dr. Ajithkumar for agreeing to help with BT Buddies and we also look forward to welcoming other new members to our team in the next few weeks.

New Trustee - At our latest trustee's meeting we unanimously voted to make David Grant (image, left) an official BT Buddies Trustee. David was diagnosed with Glioblastoma Multiforme in 2005 and has helped to raise awareness of brain tumours for BT Buddies in the past via the press and at brain tumour related conferences. David works full time so we are very grateful to him for continuing to support us and for his commitment to help others facing the same diagnosis as himself.

Best month so far - May 2010 was BT Buddies busiest month so far. 2785 people visited the website viewing 1055 pages, over 17,400 times! Andrew is keen on the statistics and keeps a close eye on things which in turn means BT Buddies is reaching those that need it.

Since our launch on 1st March 2009 we have seen a steady increase in visitors to the website and, whilst we wish there wasn't a need for the site, at the same time we are glad that it is helping so many people who clearly have a need for the information and support BT Buddies provides.

Weekly online support group - Wednesday was the 4th online support group session we have run and it is great to see so many people finding the group helpful. Despite the hiccups we have had with the application we use people keep turning up, and those of you that do will be pleased to hear that Andrew is working very hard to get the new chat application up and running for us asap!

The reason we started it was to help those who may not be able to get to their local support group and for those who find using their computer to chat much easier than sitting in a room full of people.

It works in exactly the same way as a normal (face to face) support group only those attending have to provide themselves with a cup of tea and a biscuit :) So far those attending have been a mixture of low grade and high grade patients, carers, family members and friends and, so long as you don't take your eye off the chat for too long it's pretty easy to follow.

The chat is open to anyone affected by a brain tumour and is run every Wednesday evening between 6pm and 8pm. You can find the group by clicking on this link www.btbuddies.org.uk/chat (note, this link will only work between the group hours stated above).

Telephone Support Group -Following the development of our online support group we are contemplating starting a monthly support group via phone conference. This would be at no cost to anyone wishing to take part. If you think this is a service you would like to see BT Buddies providing please email us and we will see how much interest there is in the next 2 weeks, before getting back in touch with you.

Hillingdon Brain Tumour Support Group (HBTSG) - BT Buddies also runs one face to face support group for people living in the Hillingdon/Uxbridge area. The group meets in a room at Hillingdon Park Baptist Church the last Thursday of every month between 12.30 and 2.30pm.

The group also has a website with the latest information on meeting dates, fundraising events, local area support services, help with benefits and work issues and more. You can visit the site at www.hbtsg.org.uk

Along with the support group meeting, co-hosts Becky and Cyril Haggar and other members of the group have been doing fantastically well raising funds for BT Buddies and the support group. Their fundraising total to date stands at an AMAZING £2304.14 and we would like to thank all of them for their hardwork and commitment to the cause!

Fundraising in memory of a beloved Dad - In spring 2009 Gilly Lavelle was thrown into the brain tumour world when her lovely Dad, Dennis, was diagnosed with a Glioblastoma Multiforme. Sadly, on 19th January 2010, Gilly's beloved Dad lost his brave battle surrounded by his beautiful family.

In honour of her Dad, Gilly, husband Tony (see image, right) and friends Kerrie, Tina and Jill took part in the BT Buddies treadmill-a-thon in Liverpool during March 2010, brain tumour awareness month. Then, on Sunday 23rd May Gilly also set out to take part in the annual Wirral Coastal Walk. Thanks to all their hardwork they have managed to raise a FANTASTIC £357!!!

BT Buddies would like to thank each of them for all the time and effort they put into fundraising and taking part in both events and Gilly, we have no doubt your Dad is very, very proud of you not only for raising such an amazing amount but for the way you continue to help others and raise awareness of brain tumours.

All funds raised by Gilly and her friends will be used to sponsor a course for newly diagnosed brain tumour patients run by The Walton Centre for Neurology and Neurosurgery and held at the NeuroSupport Centre in Liverpool. The next course starts on Thursday 1st July and runs for 4 weeks. Further information will be available soon, in the meantime, if you live in the Merseyside, Cheshire or North Wales area and would like to attend this course please email usThis e-mail address is being protected from spambots. You need JavaScript enabled to view it and we will pass your details on to the course co-ordinator.

Our BT Buddy, Chris Bradley - Sadly, as many of you know, our BT Buddy Chris, passed away on the 25th April 2010 at the age of 30. Chris left a partner, Christine, baby son Lucas, Mam Carole, brother Jay and sister Catherine and will be missed by many more family members and friends. Whilst Chris' battle was short, his impact on BT Buddies and others diagnosed with this disease will last for as long as we exsist. Chris' family will be working closely with us in the coming months on a memorial website for Chris and funds raised in events held by his family and friends will be split between a special project to help others cope with the day to day effects of a brain tumour and a trust fund for Chris' son, Lucas. More details will be posted on the BT Buddies website soon or youc can email us if you require further information Chris' memorial website and fund.

GOOD LUCK ORLA! -At 3pm on Monday 7th June BT Buddies supporter, Orla Graham, will be setting off on the 10k Flora Women's Mini Marathon in Dublin.

A few weeks ago Orla contacted us to let us know she wanted to take part in this event for a very special reason.

"I want to support BT Buddies as a thank you for all the amazing support they have given to my friend Catherine, Chris and their family over the course of his illness. Although I never got to meet Chris, I knew that he was a fantastic and very brave person through everything Catherine told me about him and by reading his blog. When I attended the funeral and heard Carole talking about BT Buddies and everything they had done I just wanted to do something small for them as I felt they were a very deserving cause."

We at BT Buddies, and Chris' family, are so grateful to Orla for wanting to run in Chris' memory and raise vital funds to help us continue providing information, support and hope to brain tumour patients, their families, carers and friends.

If you would like to sponsor Orla you can do so in any of the following ways:

click below To make a donation online

If you have any problems with the link above please email natalya@btbuddies.org.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it or contact Orla direct at graham_orla@hotmail.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it

To send a donation by cheque please make it payable to “BT Buddies” and send it to:

 

Teenage Cancer Trust Conference – On the 7th, 8^th and 9^th June myself and Brain Tumour survivor, Michael Johnson will be attending this conference for various reasons, the main one being to do some research for a project we are working on for brain tumour patients between 16 and 30(ish). You can view the conference programme here and we will be sure to fill you all in on how things go at the conference and I promise we will let you all in on what this project is all about sometime over the summer!

BNOS Conference 2010 - 2 members of the BT Buddies team will be attending the British Neuro-onoclogy Associations annual conference in Glasgow later this month. You can view the programme for this event here. We will, of course, report back anything that might be of interest to those affected in anyway by a high grade brain tumour.

Behind the Mask exhibition hits Liverpool

Tony Murphy, BT Buddies Trustee and Fifi, Brain Tumour Survivor

I don't think there is anyone who attended the Liverpool Launch that won't know who Fifi is! What a little superstar!

Fifi had radiotherapy for a brain tumour when she was just 3 years old, her mask is tiny and decorated like a little princess! Fifi, her Mum Mya and her Jamjar (Grandma) made the 2 hour trip to our exhibition and it was so lovely to meet them all!

There were other visitors that made long trips to be in Liverpool for our exhibition launch. Michael, a Glioblastoma Multiforme survivor and contributor to our exhibition brought his Mum, Step Dad and brother along to see his mask and the rest of the exhibition. Thanks to Step Dad for taking a few photos for us!

We would like to thank Gilly for her helping in setting everything up and Claire for going above and beyond by staying on to hand out drinks on launch evening!

The event went well and we hope we reached a few people who may otherwise not have heard about brain tumours. The next venue for our exhibition will be announced in the next few weeks so watch this space!

Beyond BT Buddies - On 25th May 2010, 14 months after starting BT Buddies, I felt an overwhelming urge to provide a place for those who have sadly lost their loved ones to this awful disease. I'm sure we have all had one of those days where you suddenly realise you should have thought things through a bit more when you started a project, well, that was one of those days for me. It was as though someone flicked a switch inside me and said 'Wake up, you help these people every step of the way but when their loved ones journey has ended, where do you think they go?'.

With this in mind I am compiling a completely independent website from BT Buddies which will provide information and support to anyone who has lost a loved one to a brain tumour. The site will launch on 1st July 2010. If anyone would like to suggest articles for this site please email me and we can take things from there.

Neuro-oncologist Q&A -Got a question you'd like to ask a neuro-oncologist? Well, now is your chance! If you have a question please email it to us and the answers will appear in our next Newsletter which will be sent out (via email) to all those subscribed. Please note, the questions can not be specific to your medical situation, these type of questions need to be directed at the medical team looking after you.

BT Buddies Online Newsletter - Following a recent poll we have decided to start a monthly newsletter for all our followers. The first newsletter will be sent out on July 1st 2010 and all you have to do to subscribe is take a look at the menu on the left and scroll about half way down where you should see an option to subscribe, any problems please email me and I will get back to you as soon as I can.

Well, that's it from me for now! I am sure there will be plenty more news items throughout June so make sure you pop back every now and again to see if there is anything new!

Your BT Buddy

Natalya and the BT Buddies Team

Although we are still ironing out some of the little issues with the chat, our second week went great! The online support group is something people are definitely finding useful so we have posted below details of our third meeting:

DATE: Wednesday 26th May 2010

TIME: 6pm - 8pm We have set the time to two hours but the chatroom will remain open until 9pm for those who may not be able to make it earlier in the evening.

PLACE: www.btbuddies.org.uk/chat (This link will NOT work until 6pm Wednesday evening)

Please note the chat facility will only be open during group meetings. The rest of the time this page will show details of the online support group and our future meeting dates, times and speakers.

DETAILS: The group is open to anyone affected in anyway by a brain tumour. Patients, carers, husbands, wives, daughters, sons, brothers, sisters, other family members, friends, medical professionals, charity representatives and anyone else I may have forgotten! If at some stage it would be useful to hold separate meetings for certain groups such as carers, then we'll be happy to do that...lets see how things go at this first one, first!

We will have a medical professional linked to neuro-oncology at 1 meeting a month.

First and foremost this is a support group for you, so we welcome your input at any time on any aspect of how the group is run.

If you'd like to become a member of the BT Buddies online support group please email us and let us know you are interested so we can get an idea of numbers and for instructions on how to login to the chat.

We look forward to 'seeing' you on Wednesday!

In spring 2009 Gilly Lavelle was thrown into the brain tumour world when her lovely Dad, Dennis, was diagnosed with a Glioblastoma Multiforme.

Sadly, on 19th January 2010, Gilly's beloved Dad lost his brave battle surrounded by his beautiful family.

In honour of her Dad, Gilly, husband Tony (see image, right) and friends Kerrie, Tina and Jill took part in the BT Buddies treadmill-a-thon in Liverpool during March 2010, brain tumour awareness month. As well as clocking up the miles and laughing lots they also managed to raise a FANTASTIC £290!!!

Thanks to their fundraising our 2010 total now stands at £10,716.58 - or 71% of our yearly target of £15,000!

BT Buddies would like to thank each of them for all the time and effort they put into fundraising and taking part in this event and Gilly, we have no doubt your Dad is very, very proud of you not only for raising such an amazing amount but for the way you continue to help others and raise awareness of brain tumours.

All funds raised by Gilly and her friends will be used to sponsor a course for newly diagnosed brain tumour patients run by The Walton Centre for Neurology and Neurosurgery and held at the NeuroSupport Centre in Liverpool. The next course starts on Thursday 1st July and runs for 4 weeks. Further information will be available soon, in the meantime, if you live in the Merseyside, Cheshire or North Wales area and would like to attend this course please email us and we will pass your details on to the course co-ordinator.

We'd also like to wish Gilly and her friends all the best as they take part in the Wirral Coastal Walk this coming Sunday in memory of her Dad!

Following our first meeting last night we feel that, once we get the issues ironed out, the online support group is something people are definitely finding useful so we have posted below details of our second meeting:

DATE: Wednesday 12th May 2010

TIME: 6pm - 8pm We have set the time to two hours but the chatroom will remain open until 9pm for those who may not be able to make it earlier in the evening.

PLACE: www.btbuddies.org.uk/chat (This link will NOT work until 6pm Wednesday evening)

Please note the chat facility will only be open during group meetings. The rest of the time this page will show details of the online support group and our future meeting dates, times and speakers.

DETAILS: The group is open to anyone affected in anyway by a brain tumour. Patients, carers, husbands, wives, daughters, sons, brothers, sisters, other family members, friends, medical professionals, charity representatives and anyone else I may have forgotten! If at some stage it would be useful to hold separate meetings for certain groups such as carers, then we'll be happy to do that...lets see how things go at this first one, first!

We will have a medical professional linked to neuro-oncology at 1 meeting a month.

First and foremost this is a support group for you, so we welcome your input at any time on any aspect of how the group is run.

If you'd like to become a member of the BT Buddies online support group please email us and let us know you are interested so we can get an idea of numbers and for instructions on how to login to the chat.

We look forward to 'seeing' you on Wednesday!

Following our recent survey about an online support group we have decided on the following details for our first meet:

DATE: Wednesday 5th May 2010

TIME: 6pm - 7pm We have set the time to one hour but the chatroom will remain open until 8pm for those who may not be able to make it earlier in the evening.

PLACE: www.btbuddies.org.uk/chat (This link will NOT work until 6pm Wednesday evening)

Please note the chat facility will only be open during group meetings. The rest of the time this page will show details of the online support group and our future meeting dates, times and speakers.

DETAILS: Our first meeting will give each of us time to explain who we are and why we are here. We will also discuss what we would like to get from the group and find out your thoughts on guest 'speakers' and the issues that are most important to you all.

The group is open to anyone affected in anyway by a brain tumour. Patients, carers, husbands, wives, daughters, sons, brothers, sisters, other family members, friends, medical professionals, charity representatives and anyone else I may have forgotten! If at some stage it would be useful to hold separate meetings for certain groups such as carers, then we'll be happy to do that...lets see how things go at this first one, first!

We will have a medical professional linked to neuro-oncology at 1 meeting a month.

First and foremost this will be a support group for you, so we welcome your input at any time on any aspect of how the group is run.

If you'd like to become a member of the BT Buddies online support group please email us and let us know you are interested so we can get an idea of numbers and for instructions on how to login to the chat.

We look forward to 'seeing' you on Wednesday!

BT Buddies has setup a page with a little about Chris and a book of condolence that anyone with a message for Chris's loved ones can sign.

If you have a moment please pop over and read a little about this wonderful guy and leave a message. The family have also requested family flowers only.  Donations, in lieu, if desired can be made to BT Buddies.

For all those who have been following Chris Bradley's blog or who have got to know about him through our forum, it is with great sadness that I have to say Chris passed away late last night following a short but courageous battle against a Glioblastoma Multiforme.

When I began chatting with Chris he posted the words from a poem/song that Tupac had written and today I just can't get those words out of my head...

Chris, it has been an honour to share the highs and lows of the last few months with you and all your family. I am glad that you are no longer suffering but wish that this hadn't been the end :(

To all of Chris' loved ones, you are in our thoughts and prayers xxx

We at BT Buddies understand that sometimes getting to your nearest support group can be difficult. So, to try and help those who might not be able to attend their nearest group or if you would prefer to chat through the world wide web, we have decided to set up a weekly online support group.

Before we set a date and time for the first meetup we would appreciate it if anybody interested in being part of the group could answer a few questions for us to make sure we are providing you with the best and most useful group we possibly can.

Click here to take survey

All surveys need to be completed by Friday 23rd April 2010 and our first group meeting will be held week commencing 26th April 2010.

Atrium, Capital Buidling, Old Hall Street, Liverpool

Monday 17th May 2010 will see the start of our Behind the Mask exhibition in Liverpool.

The details for the Liverpool Exhibtion are:

 

Location: Atrium, Capital Building, Old Hall Street, Liverpool

 

Dates: Monday 17th May to Friday 28th May 2010

 

The main exhibition will be held at the Atrium but items will also feature at Clatterbridge Centre for Oncology, The Walton Centre for Neurology and Neurosurgery and the Neurosupport Centre.

As well as the display being open to the public there will also be an invitation only champagne reception to launch the event in Liverpool and to mark a very important moment for BT Buddies.

Invitations to this event will be sent out later this week so keep your eye on your post!

If you have any questions or require any further informaiton about our Liverpool event please email us or call 05601 751226

View of our exhibition space at The Forum, Norwich

Day 1 and 2 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

I’m not sure ‘buzzing’ is the best way to describe how I am feeling at the end of our second day here in Norwich, but it’s the best one I can come up with right now!

Monday went really well, we got things setup how I wanted them (well, after a while) and we had the opportunity to speak to a few people one to one , one of whom had actually had surgery for a brain tumour some years ago. Many people also stopped by and read each of the little stories that go along with the masks which is something I had hoped would happen...rather than them just glancing as they wandered by.

We also had a visit from a lady who works at Dunston Hall, she was delivering one of the prizes for the treadmill participants but she stayed quite sometime with us. Andrew and I walked her around the exhibition and we chatted about many different brain tumour related issues...another lovely encounter!

But today, Tuesday, has been better than I ever expected.

I am writing this having just watched a group of 5 ‘hoodies’ laughing and joking as they approached the masks (obviously having no idea what the exhibition was about) then when I wandered over one asked what the masks were for...a rowdy group quietened and actually listened to my brief explanation of what the masks are used for...then, they looked at Michael Johnson’s mask (see image, right) and one of the teenagers was quite moved, not only by Michael’s story, but by all the amazing words attached to his mask...”wow, I don’t know how I would feel if I ever went through something like this but this guy (Michael) is so positive”... I think we can call that a job well done!

Earlier a lady with a young daughter was moved to tears by one of the stories she read and spent quite sometime chatting with me about various aspects of having a brain tumour, and about how we all go through life oblivious to so much yet when faced with an exhibition like ours that confronts one of those things hardly ever spoken about we suddenly realise just how lucky we are.

Today has also seen many little conversations, lots of people have picked up our leaflets and booklets, we’ve had walkers on the treadmill and I think both Andrew and I feel the days seem to be getting better and better.

On Thursday the Sheriff of Norwich, Professor Tim O’Riordan and Chloe Smith MP for Norwich North will be visiting the exhibition and on Friday Charles Clarke MP for Norwich South will also be here to talk with us and view the masks...as you can imagine we are thrilled with the support we are receiving from all these people and the Norwich community.

I’d also like to thank each and every one of the mask participants for not only putting their all into the decorating of their masks but for sharing their stories and inspiring people I never dreamed would be interested in our display and the cause.

I will try to update things again later in the week but bear with me, things are crazy busy and when I get home all I want to do is sleep!

 

View of our exhbition space at The Forum, Norwich

 

Day 3 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

Michael Johnson's story and mask

I arrived at the exhibition around 8.45am today and was surprised to see quite a few people looking at our exhibition.

As I placed my things under the desk I was approached by 2 ladies who were waiting for the library to open and the masks had caught their eye. They were particularly taken by Michael Johnson's mask and used the words 'truely inspiring', they also said that they had found the whole exhibition beautiful and very moving. This is what I had hoped our exhibition would do, help to show people what dealing with a brain tumour is like and giving them something positive to take away from their time spent reading the inspirational stories.

The day's encounters didn't stop there. A few minutes later a lady with a young child in a pushchair slowly walked around each of the masks before stopping at our main information table. Andrew and I had begun to get a feel from most people as to whether they wanted to chat or not and for some reason I felt I should go over and say hello to this lady.

Within a few minutes I had found out that her mother was in the last stages of dealing with a Glioblastoma Multiforme. The family were finding it difficult to understand what was happening too her and felt they had no support at all. I gave the lady some information which she was very grateful for and my offer to talk or email any time made her teary eyed. She said she was just pleased that for the first time since her mothers diagnosis she was able to talk to someone who understood.

A little later in the day Trudy Thomas, former Brain Tumour UK community fundraiser wandered by and had to double back when she realised it was a brain tumour exhibition! Praise from others in the 'business' (well, she used to be!), is great to hear and Trudy was very impressed with the exhibition.

We also had a visit from a radiographer from the Norfolk and Norwich who had heard about the exhibition from one of the oncologist and wanted to take a look. He spent quite some time look at everything and we then had a long chat about the exhibition, how it would help other radiographers to see something like this and possibly give patients a different way to look at their own masks as they are going through treatment. He also discussed using some of our images in the radiotherapy waiting room and the possibility of delivering a lecture around our exhibit to others at the hospital. Both Andrew and I found his visit extremely positive and we were very glad that he took time to visit and speak with us.

Our final visitor for the day was Michelle, secretary to Dr Ajithkumar, who had had an email and phone call from the radiographer who visited us earlier and wanted to come and take a look at the masks herself. Andrew and I watched her walk from each mask reading every story and I was about to get up to introduce myself when she came over to us. We spent quite some time chatting about many different aspects of dealing with a brain tumour and the philosophy that Dr Ajithkumar has when dealing with the brain tumour patients that he sees.

Although today's 'traffic' felt a lot slower than the previous couple of days there were still plenty of people looking at all the masks and reading all the stories. Our experiences with the visitors from the hospital were also very encouraging, I think I had underestimated just what an impact this exhibition would have and the wide range of people it would reach out too.

The end of day 3 and I was feeling very positive about the work we were doing, but I was getting very tired. After packing up for the night Andrew and I knew the next 2 days were going to be busy and quite important for the future BT Buddies.

Day 4 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

Coffee to start the day!

Today, again, brought its fair share of visitors affected in some way by a brain tumour. One gentleman, who was currently receiving radiotherapy at the Norfolk and Norwich for a Glioblastoma Multiforme had been told about us by one of the radiographers and wanted to pop along to see what others had done with their masks. He stopped to chat for a little while and may even take his mask home when he finishes treatment and decorate it!

Another gentleman wandered over a little while later and asked if we had any information on coping with the side effects of brain surgery and a tumour. His wife had surgery 7 years ago and was left with partial paralysis but to date she had just been trying to cope herself and wasn't aware of any services such as neuro rehabilitation which may be of some use to her. It felt good to be able to give out information on local support services as well as national ones and I hope that this lady finds the support she needs now.

Just like the few days before, today saw a steady stream of people stopping to look at the masks and reading the stories. A lot of people have taken booklets and leaflets and asked questions about the masks and brain tumours in general. We also had a few walkers on the treadmill too which was nice.

One of those who took a moment to pose on the treadmill was Norwich Town Crier, David Bullock (see image left). Andrew got talking to David outside the Forum and he kindly agreed to come in and see what we were up to. Amazingly his wife had had a brain tumour many years earlier and was now in her late 70's! A thoroughly nice chap, David actually popped back the next day to see us and how we were doing.

Media coverage of our event was one of the things that we were a little disappointed about during the week but the Norwich Evening News did send a photographer out today who spent quite some time photographing all our masks for a short piece which was featured in the paper on the Saturday (after the exhibition!). For those who have masks in our display, I made sure I got a copy of the paper for each of you and will continue to keep copies of any future press articles etc and send them all once we have finished the exhibition in November (if not before).

Not long after the photographer had left Chloe Smith, MP for Norwich North, made it for a quick tour of the exhibition and to pose with our treadmill! I was very pleased with the interest she took in the masks and the explanation I gave of how they are made and used. It is always interesting to show the mask to someone and then a photo of how it is used, the reactions vary, in Chloe's case she was immediately sympathetic towards those experiencing the whole mask making and radiotherapy process.

Natalya explains to Chloe Smith, MP for Norwich North, how the mask is held in place during each radiotherapy session

Unfortunately Chloe was running a little late so could only pose along side the treadmill, but, we would like to say thank you to her for taking the time to come and meet with us and find out a little more about brain tumours.

The rest of the afternoon flew by again but we made a joint decision to finish an hour early as I was really struggling and hope an extra hours rest might help me make it through tomorrow without feeling too bad.

 

Day 5 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

One of the first things that comes to mind when I look back on today's visitors is the lady whose husband had been diagnosed with a grade 4 brain tumour in 2005. After he was diagnosed she had asked if there was a support group nearby that they could attend - they were told no, there was nothing. They also asked if there was anyone else in a similar situation to them that they might be able to speak to - again they were told no. The lady felt she was completely on her own and this was how their journey was right to the time when her husband sadly passed away. She wanted us to know that she was so glad that there was now somewhere people could go to receive the kind of support she needed and hoped BT Buddies continued to go from strength to strength.

We had another visitor from the Norfolk and Norwich hospital today too. A radiographer (see image on right) who had written a paper on whether the clear perspex or thermoplastic mask was better for delivering the most accurate radiotherapy. The lady spent a long time viewing each of the masks and taking photos before coming over to chat to us about how great and informative the exhibition was. We hope to be able to find out more about the ladies research in the next few weeks and will let you all know when we do.

Then, right on time, Sheriff of Norwich, Professor Tim O'Riordan arrived to talk to us about our work and to view the exhibition. I missed his arrival so walked him halfway through Andrew and Tim chatting. I turns out Tim had had a secretary whose husband passed away from a brain tumour so he was really keen to look at the masks, read the stories and find out a bit more about brain tumours and BT Buddies.

Andrew showing Sheriff of Norwich Professor Tim O'Riordan around our exhibition

 

Sheriff of Norwich Professor Tim O'Riordan on our treadmill alongside BT Buddies Founder Natalya

 

2.30pm, and bang on time too, Charles Clarke, MP for Norwich South, wandered into the Forum and over to our exhibition. I'm not a politics person but when you see the odd snippet on the news or in the papers you kind of form an opinion of a person without ever actually knowing them at all! Whatever our opinion of Charles Clarke had been, both Andrew and I were blown away with how down to earth, and interested in the cause, he was.

Charles Clarke, MP for Norwich South, taking things in his stride

Charles spent some time talking to us about the masks, brain tumour statistics, how the world of politics works when it comes to things like Early Day Motions and our events for International Brain Tumour Awareness Week in November this year.

He also didn't even hesitate when Andrew asked if he would walk a mile for us on the treadmill! The jacket was off and he started his very brisk walk interrupted every now and then by constituents wishing to chat to him about the up coming election and police officers talking about how far they walk in a day!

Before he left Charles offered his full support to BT Buddies for the future and will be taking part in one of our walking events in June 2010!

Charles Clarke, MP for Norwich South talks to police officers whilst walking a brisk mile for brain tumours

The rest of the day passed very quickly with a few more walkers and visitors, and when 6pm came I even felt a little sad that the week was over!

As we packed up the exhibition I also felt very proud of all the people that had made this possible.

To each and everyone of you who decorated a mask, or helped to, thank you. You are raising awareness of brain tumours and will continue to do so for many months to come!

And to all those who stopped to find out a bit about our exhibition and brain tumours throughout the week or walked on our treadmill, we appreciate it more than you know.

Now bring on events in Liverpool!

Your BT Buddy

Natalya Jagger

BT Buddies Founder

You can view a slideshow of all the images from our event in Norwich below...

All images © 2008 - 2009 Copyright btbuddies.org.uk

Following the success of our Behind the Mask exhibition in Norwich a couple of weeks ago we have decided to make the next venue for the exhibition even bigger and better than the last!

We will be working in partnership with the Liverpool 2010 Year of Health and Wellbeing team, the NeuroSupport Centre and Clatterbridge Centre for Oncology to allow our message to reach as many people as possible in the North West!

And just to keep you all on the edge of your seats....that's all I am going to tell you!!! Full details will be posted here on Friday 16th April 2010 so watch this space!

 

We are pleased to announce Wayne Osmond as the latest person to sign up to decorate a mask for our 'Behind the Mask' Exhibition.

Wayne was diagnosed with a brain tumour in 1994 and continues to do well today. He is currently on The Osmond's 50th Anniversary tour but Wayne and his wife, Kathy, were keen to help with the project and we are very grateful to them for squeezing this into their very busy schedules!

The mask is now at BT Buddies HQ and Kathy, Wayne's wife, said " Wayne and I decorated the mask with some of the items that helped Wayne through the whole process of brain, surgery, and radiation."

The exhibition has visited Norwich and Liverpool so far and will appear in the House of Commons in November 2010! We are also planning more exhibition during 2011.

If you are interested in taking part or would like to help organise an exhibition in your area please email us and we'll get back to you as soon as we can.

Charles Clarke MP congratulates BT Buddies on their exhibition

 

It was just gone 11pm on Sunday when Natalya and I decided we were happy with the way the exhibition looked. Just time for a late supper and some rest before the exhibition opened, we were both quite exited about it all.

 

Throughout Monday there was a steady flow of people not just taking a quick glance at the radiotherapy Masks and photographs but spending time reading the 'Stories' of the people that decorated their mask and reading the many booklets and leaflets that were on display and available to take. Both Natalya and I were often in conversation with the viewers and I was amazed at just how many people had been 'touched' by a Brain Tumour (either themselves or a friend/family member).

 

 

Sadly we had been let down with our treadmill on Monday but Les from from Hire Fitness in Cambridge stepped in at short notice and by 6pm on Monday our treadmill was up and running (well walking) and ready for people to assist us in our walk around the coast for Brain Tumours initiative.

 

Throughout the week some great people made multiple trips to walk a mile for us along with many people that made a special trip just to walk on the treadmill - thank-you all. We were also lucky enough to have some local 'names' appear on our Treadmill and view the exhibition, Chloe Smith MP, the Town Crier, the Sheriff of Norwich and Charles Clarke MP all had a go on it and special thanks go to Charles Clarke MP who at one time was holding his surgery whilst walking his mile (and at a healthy pace I might add).

 

We also managed to secure the help of Neurologist Dr Ajithkumar to help with www.BTBuddies.org.uk and most of his Radiotherapy Team managed to pop down from the Norfolk & Norwich to view it. Natalya also managed to get some donations from local businesses for a raffle for all treadmill walkers and special thanks should go to Nicci from Dunston Hall for the Free dinner for two Voucher and for spending almost 2 hours with us on Monday.

 

For the first time in almost 4 years I found myself openly talking to total strangers about Rose. The week proved far more helpful to me personally than I ever imagined and it gave me a warm feeling.

 

Whilst it was a very long and tiring week it ended all too quickly on Friday evening and as we were packing up it felt good that 30,000+ people had passed the exhibition and many 1,000 had stopped to view the displays and learnt a little about Brain Tumours and in particular the Radiotherapy Mask and what patients, their carers, family and friends go through on a daily basis when living with a brain tumour.

 

Your BT Buddy,

Andrew

Today has been another busy day at the Norwich Behind the Mask exhibition and Treadmill-a-thon. We will write a full report on the day and the rest of the weeks activities over the weekend but we wanted to write a special thank you to Charles Clarke, MP for Norwich South, who popped in to visit our exhibition and find out a bit more about brain tumours.

Charles was very impressed with the hardwork patients and family members had put into decorating their masks and offered his support to BT Buddies for the future.

He also managed to clock up a mile on our treadmill! Checkout the picture below...

Watch this space for a more detailed update in the next couple of days!