Nigel, as Chair of ESRT, has prepared a brief annual report to keep you up-to-date with the achievements of the part year.
The charitable trust was formally created through the Declaration of Trust Deed signed by its eight trustees on 21st June 2011.
We’ve had a fantastic first year, massively exceeding all of our expectations, and hopefully getting the essential things done to enable us to develop further in the future.
In its first financial year to 31st March 2012 the Charity has:
- Raised over £22,000 to further its aims and objectives;
- Developed and launched a website;
- Conceived and published literature regarding Ewing’s Sarcoma;
- Secured HMRC recognition of its charitable trust status for tax purposes;
- Entered into a partnership with Bone Cancer Research Trust to jointly fund research into Ewing’s Sarcoma and set aside £10,000 for this purpose;
- Successfully applied to the Charity Commission for England and Wales for registration as a charity;
- Registered with the Virgin Money Giving scheme;
- Commenced preparatory work towards gaining accreditation of the Information Standard (http://www.theinformationstandard.org);
- Appointed a ninth Trustee;
- Commenced work on developing policy and procedures to safeguard and protect children and vulnerable adults in readiness to support the aim of engaging local ‘champions’ to promote awareness of Ewing’s Sarcoma and co-ordinate fundraising events.
At our first meeting, when the charity was formally formed, we decided to enter a Dragon Boat Festival at Bewl Water, and managed to enter five boats into a wet and wild weekend. This resulted in us raising an amazing £11,000, which was more than double our original target of £5,000, which would have allowed us to apply for registration with the Charities Commission, a key goal for our first year.
The event also had a lasting knock on effect, with a number of participants and their friends and families going away and spreading the word, or even taking on other fundraising events. One particular highlight was receiving a donation from Berry Gardens, who had conducted a Jaffa Cake eating competition!
We’ve also undertaken a huge number of administrative tasks over the course of the year, whether applying for registration with the Charities Commission, or registering with VirginMoneyGiving to provide easier sponsorship facilities for our numerous fundraisers.
With Matt returning to University in October, we had to manage our resources and manpower more effectively, and have gradually improved with this over the last 8 months.
We also benefitted hugely from Matt’s selection as an Olympic torchbearer in December, as he was nominated partly for his work in setting up the charity. It was a great reminder of how we can change people’s lives, and really gave us a further push in our efforts.
It also helped us raise the charity’s profile hugely, and as a result we saw many more Ewing’s patients and their families get in touch, seeking help and advice, and wanting to help us raise money for research in the future – and not all of them in the UK, with some requests from the USA and Israel, to name just two countries.
Matt’s friends at University of Leicester also really helped out, with Tom, one of his housemates, arranging a sponsored 24-hour row with the Boat Club, raising another £1,500 to help us out. It was a fantastic event, and the University went to great lengths to facilitate the efforts of the Club. A couple of the members of staff even got involved!
We also held two bucket collection events at Tonbridge Angels, our local semi-professional football team, which were also valuable sources of income over the course of the year.
Towards the end of the financial year, we also took on another trustee. We were aware of the Information Standard, an accreditation system to ensure all medical information online is credible and well-informed, and knew it would take a considerable amount of work to achieve it. With this in mind, we appointed Mariselle Harrison, who volunteered to take over the running of the process, and has put in many hours helping us along since.
I would also like to note the efforts invested by all of our trustees, in many different ways.
Many of the administrative tasks aren’t why we set up the charity, but their importance cannot be overstated. Colin has helped us out tremendously with helping develop our Safeguarding Policy, and with his invaluable insight into form-filling!
Claire, a nurse who treated Matt at UCH, has been fantastic in taking part in the events, and ensuring she goes away to raise some money through her work as an Oncology nurse, even educating some registrars we’re told!
Chris has been able to get involved in helping us with the website and some of our infrastructure work, as well as utilising his contacts to allow us to run off a considerable number of leaflets, cards, and promotional work to further our goals.
Elaine has been fantastic in her commitment, taking part in the Dragon Boat Festival, and has found a lot of information on other Ewing’s sufferers, and trying to increase our reach beyond the confines of Kent.
Jo has been extremely dedicated, and put together an extremely well-dressed crew at the Dragon Boat Festival, as well as getting involved in all of our events, including bucket collections in the pouring rain in December, and helping us reach out to local schools to raise awareness.
Finally, Matt, as the driving force behind the charity, has managed to combine the rigours of a law degree with the demands of running a charity. As his dad, I can say sometimes I’ve asked him to find more time for study, but he’s managed to find a way to study and contribute a huge amount to the Trust’s work.
£22,000 is a fantastic achievement, but there is still work to be done. There are research options out there, and tremendous potential for the unearthing of new treatments, both preventative and combative, in the near future. But £22,000 won’t be enough.
Therefore, the Charity’s priorities for the forthcoming year are:
- To formalise its partnership with Bone Cancer Research Trust by entering into a Memorandum of Understanding;
- Registering with Vodafone’s Just Text Giving scheme;
- Achieving the Information Standard accreditation by the year end;
- Recruiting and training local champions, and rolling out the programme to engage others in achieving the aims and objectives of the Charity;
- Recruiting Ewing’s Sarcoma sufferers, those in remission and their families in promoting the awareness aspect of the Charity’s work.
With the continued dedication of our trustees, supporters, and a range of people who’ve given us fantastic assistance throughout the year, we can achieve these goals, and continue raising valuable funds in the future.
Nigel