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As a family we had many things to deal with, not just Ellies illness and treatments, but the travelling backwards and forwards to Addenbrookes, the emotional strain etc..

As Ellies illness progressed we found we needed more support, but discovered that in the East Anglia Region there was not a good network of support services.

We could take Ellie to the James Paget Hospital whenever and as many times as necessary but it was in other areas where the system didnt work for us.

With brain tumours, time is of the essence. It takes 8 weeks for a wheelchair to be custom made and sadly by the time Ellie received hers she was too ill to use it. The same applies to other pieces of equipment. Maybe there is some way we can speed things up, or with greater knowledge try to anticipate needs earlier.

We found there was very little information readily available to us about brain tumours and had to do lots of our own research, mainly on the internet.

It became very obvious that there is not enough medical research.

THIS YEAR RESEARCH HAS SHOWN THAT BRAIN CANCER HAS OVERTAKEN LEUKAEMIA AS THE LEADING CAUSE OF CANCER-RELATED DEATHS IN CHILDREN

BRAIN CANCER KILLS MORE CHILDREN THAN MENINGITIS

This charity has been set up to fill these gaps by:

• Funding the desperately needed research into brain tumours.
• To benefit other children who are suffering from cancer by buying a much needed piece of equipment, to fund physiotherapy, maybe even a day out a special toy or a T.V. and some videos for days when they cant get out
• Setting up a website to provide information on brain tumours and offer a network of help and advice from other agencies, parents, charities, medical organisations etc.
• To raise awareness into this devestating disease

We have 3 trustees at Ellie's Trust who organise events to raise funds and awareness. They give their time for free to make sure that as much money as possible is going to help us make a difference to those families who have a child with cancer or a brain tumour.

The Trustees are:
Chairperson	Wendy Savage - Ellie's Mum
Vice-Chairperson	Ali King - close family friend
Treasurer	Sharon Moore - Ellie's and her twin sister Cassie's Godmother

We are also very proud to have the support of three celebrity Patrons...............

Patrons

Paul Evans

Paul Evans became patron of Ellie's Trust in March 2003 and has helped us raise the profile of the Trust. In March he led a team of over 30 runners in the Bungay Black Dog races to raise funds and awareness. He is a well respected athlete having competed in 2 Olympic finals, 2 world championships, 13 British titles at 10,000 and half marathon. First in the Chicago marathon, second in New York and third in London: the latest record was breaking the half marathon British and European record as a veteran in the Great North Run at the age of 40. It seemed appropriate to ask Paul to be a Patron as he comes from our home town of Lowestoft and Ellie enjoyed sport. Paul is pictured here after running for the 'Trust Team' and winning the Bungay Half Marathon

Jacqueline Wilson OBE

There has been some very special news for Ellie's Trust as award-winning author Jacqueline Wilson OBE gives her support. The Trustees are delighted to announce that the celebrity author of children's novels has become a Patron of the Charity. After selling over 10 million books in the UK and winning several awards, her books were always a favourite of Ellie's who kept a 'Jacqueline Wilson Diary' for 2 years including the times when she was ill. One of Jacqueline's books in particular, 'Double Act' has recently been adapted to stage. It was after seeing the this version at Norwich Theatre Royal that Wendy, Ellie's mum, felt compelled to write to Jacqueline as her views and thoughts portrayed in the play about twins were very accurate..

Bob Blizzard MP for Waveney

Bob Blizzard MP for Waveney (the constituency where Ellie's Trust is based) has shown us tremendous support. He attended an adjournment debate on 26 th April 2004 at the Houses of Parliament. This was an amazing opportunity for him to help us to raise the profile of the issues surrounding the Brain Tumour Community. We were overwhelmed at the level of positive interest and support we have since received. Following this Bob tabled an Early Day Motion (1471). This is similar to a petition which MP's can sign at the Houses of Parliament. Over 100 all party MP'S followed Bob's lead and signed the EDM to show their support to Ellie's Trust and the brain tumour community. In June, Bob accompanied Wendy Savage (Chairperson of Ellie's Trust) for a meeting with the local Primary Care Trust, to explore opportunities to work together.   On Tuesday 26 th October, invited by Bob Blizzard MP, fifteen all Party MP's and four members of the House of Lords joined Ellie's Trust and fellow United Brain Tumour Campaign Charities for a reception at the House of Commons.To add weight to their arguments the charities were joined by a neuro-scientist, neuro-surgeon, neuro-oncologists and a neuro-nurse specialist who all took the opportunity to get their points of view across.Earlier diagnosis and earlier treatment of Brain Tumours is just one of the areas that the charities are seeking to address and was the theme of the reception. Bob has since accepted our offer to become Patron of Ellie's Trust, this will help us to raise our profile locally, to enable us to support more local families who have a child with cancer or a brain tumour

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Do you know a child who may benefit from Ellie's Trust?
Simply complete the referral forms

Download
Referral Form


When completed send to the following address
ELLIE SAVAGE MEMORIAL TRUST
53 Victoria Rd, Oulton Broad, Lowestoft, Suffolk, NR33 9LW

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We can help in the weeks following diagnosis by providing support and information......we will be there in the months to come to support you during treatment.

Here are some of the ways which we have helped families in the past year

• provided a computer for a teenager to help him through college
• provided extra maths tuition for a teenager to help him catch up on missed school work
• provided a family with a short break to centre parcs
• covered the cost of  travelling expenses

Ellie's Trust can...

• provide financial help
• buy a piece of equipment
• organise a day out
• provide a short break for the whole family
• fund research into brain tumours

...any request for help will be considered

If you or someone you know could benefit from the help of the

Ellie Savage Memorial Trust - please contact us....
WENDY SAVAGE - 53 VICTORIA ROAD
OULTON BROAD, LOWESTOFT, SUFFOLK NR33 9LW
  TEL: 01502 539509