FIND US AT WWW.ADAMSHATS.ORG.UK AND WWW.BIGSEABIGSKY.BLOGSPOT.COM

2011-09-27T02:37:00.000-07:00

Dear friend

A Sustainable future for the work of Adam’s Hats

Since its inception in 2003, Adam’s Hats has achieved significantly in all 3 areas of its endeavour:

1 The Holiday programme and partnership with Holiday Property Bond goes from strength to strength, with around 20 families per year being offered holidays. Our ability to expand has gathered its own momentum having established good communications with other Bondholders who are inclined to transfer unwanted points to us, as well as excellent relationships with Clic Sargent social workers who nominate families into our holidays, around the country.

2 The neuroblastoma research initiative in conjunction with SIOPEN has resulted in the older child/younger teenager group being mainstreamed into the ongoing European High Risk Neuroblastoma trial, through a new treatment regime that is already being used in clinic. At the end of last year, there were at least 2 children in our focus age group, treated at Great Ormond Street Hospital, who are benefiting from the new regime. Our work has highlighted the lack of attention previously given to this group of patients, and has upped the focus on the benefits of international collaborative studies for low-patient number groups.

3 Our stimulus and support for Maggie’s Centres to research better ways of supporting young patients and the young people around the young patient (siblings and friends), has led to fresh findings with the potential to add value to the higher profile palliative care is starting to enjoy, from policy makers, large charities and health professionals.

In addition, Adam’s Hats has secured a place in the consciousness of the children’s cancer world through its contributions to:

- Children’s Cancer and Leukaemia Group (CCLG)

- National Cancer Research Institute’s Consumer Liason Group (NCRI CLG)

- Cancer52 (a recognised umbrella body for charities representing rarer cancers)

and is viewed as a collaborator and potential partner of Marie Curie Cancer Care, Neuroblastoma Society, and the Teenage Cancer Trust.

A combination of what is now expected of us from our co-protagonists, whether they are health professionals, other charities, or families who benefit from our work, as well as what we expect from

ourselves, and the ever-present demands of proper governance and fund raising effort, are challenging for a charity of our size. Frankly, with your help and unstinting support, we have been ‘punching above our weight’ and have arrived at a point where our ideas for projects are running ahead of our ability to pull them off to the extent and level of quality we demand.

Along with many other charities in the sector, we believe that collaboration is a more fruitful way forward to achieve our mutual goal of improved outcomes for children and families. Consequently, we have held open discussions with a number of recognised organisations to explore what alternative routes there might be to secure the work we want to do, and build on the work we have done, within their broader and more robust frameworks. The outcome of these discussions is

1 Adam's Hats holiday programme has been transferred to a dedicated provider of holidays for children and families with cancer, Homes with Heart, which is run to the same standards as our current programme. Holidays will continue to be offered with the benefit of the credit we have built up with Holiday Property Bond, and labeled ‘in conjunction with the Adam Hay Fund’.

http://www.homeswithheart.org/

2 Our neuroblastoma research interests and our psychosocial support for children and families will be continued by the Children's Cancer and Leukaemia Group (CCLG) to which we are divesting our residual funds. These will be ring-fenced as the Adam Hay Fund and continue to receive donations and sponsorship proceeds, to be used on a restricted basis to continue our work. I will become a Trustee of CCLG to remain involved.

http://www.cclg.org.uk/

3 Adam’s Hats will cease to be a separate charity as at 31 August 2011.

I very much hope you can join me in feeling personally even more committed to seeing our work continue and thrive, than to the need to maintain a separate identity for the charity. We hope you will feel able to support the Adam Hay Fund in the same way as you have Adam’s Hats. The only real change is that your standing order details or donation payees should be updated. Please see the note at the foot of this letter for CCLG bank details. Finally, I hope you all agree that such a change is a positive growth step, and recognition of our position in the sector. After all, Adam is 21 now, and ready to go out into the world.

This comes with warmest wishes and thanks from the Trustees of Adam’s Hats and from my family for your enthusiasm and support for all we have done so far. I hope our relationship will continue under its new banner of The Adam Hay Fund.

Susan Hay

Chair of Trustees

Note: Donations should now be made to

Reference Adam Hay Fund (Please remember to reference your payment!)

A/c name Children’s Cancer & Leukaemia Group

A/c No 61209450

Bank HSBC, 2-6 Gallowtreee Gate, Leicester, LE1 1DA

Sort Code 40-28-08

2010-11-11T06:46:00.000-08:00

Julian Hand lights up Blast 10 at the RIBA...

2010-07-06T13:46:00.001-07:00

10K results...

2010-06-01T03:40:00.000-07:00

Neil, Jamie, Jonny, Tash, MIke and Joe all ran for Adam's Hats in the
BUPA London 10k yesterday.

Finishing in well under the hour, the team did us proud.

The route took them along the final leg of what will be the Olympic
Marathon trail in 2012, so very exciting on many levels.

Thank you so much!

The Hankins Family enjoys an Adam's Hats holiday at St Bride's Castle

2010-05-27T15:11:00.000-07:00

'We would like to say thank you so much for the holiday to St Brides. We can not tell you how much we enjoyed our holiday, it means so much to us'.

Calvin Joanne Joshua and Eloise

Tracy Wilkes-Green, our Holiday Programme Manager writes:

St Brides Castle, in a remote and unspoilt corner of Wales has become a popular HPB location for our families taking holiday’s, with five families choosing the location already this year, one family said “The holiday helped us get away from the difficult time our family is going through at the moment. It was lovely to put our problems to the back of our minds, it was lovely accommodation with very nice, helpful staff”. And another, who “had a fantastic time, the accommodation was of a very high standard, we were very impressed and grateful, the facilities were excellent and we had a wonderful time”

Thank you St Bride's!

start supporting matt!

2009-12-16T01:35:00.000-08:00

http://justgiving.com/mattyjones1

Event: Virgin London Marathon
Event date: 25/04/2010

Congratulations Maggie's!

2009-10-20T02:26:00.000-07:00

Adam's Hats sends congratulations to Maggie's Cancer Caring centres for achieving the prestigious Stirling Prize for architecture, for its London centre designed by Richard Rogers. We are very proud to be associated with Maggie's through our latest research initiative which aims to provide pyschosocial support for young people affected by the cancer of a sibling or friend.

cut and paste the following link to see the winning site!...

http://www.maggiescentres.org/maggies/maggiescentres/home/newspublications/news/maggies_london_wins_riba_stirling_prize_2009.html.html

The wish lanterns @ ADAMS HATS / BLUEHORSE event...

2009-09-22T14:32:00.000-07:00

Eden Half Marathon 11 October

2009-09-22T10:54:00.000-07:00

Frank Deveux is running this new Half Marathon for Adam's Hats! Support Frank through JustGiving by clicking on the link below. But hurry, because he runs in just 2 weeks' time!

http://www.justgiving.com/frank-deveux

2009-09-16T23:58:00.000-07:00

A huge thank you to Bluehorse for raising a magnificent £8500 for Adam’s Hats at a unique event in Cornwall, on 5 September.

A classical riding demonstration using Portuguese Lusitanos, including mounted opera singing, was followed by an auction of promises led by a catwalk on horseback modelling pieces from the Luella collection. Cornish holiday cottages proved extremely popular, as did personalised drawings and photograph sessions for horses and dogs. A day’s sailing, and paintings and pottery from local artists were also amongst the promises.

Cornish pasties, a hog roast and Roskilly’s ice cream were available all night, washed down with Sangria, and 100 Wish Lanterns were launched into the sky at midnight as a wonderful close to a beautiful evening.

2009-09-08T11:53:00.000-07:00

Adam's Hats collaborates with Maggie's centres!

2009-09-08T11:39:00.000-07:00

Adam’s Hats is meeting its aspiration to help young people who surround young cancer patients

An innovative and unique collaboration between Adam’s Hats and Maggie’s Cancer Caring Centres will enable children and young people with cancer and their family and friends to access cancer support from Maggie’s Centres.

Designed by some of the world's most respected architects, Maggie's Centres are designed to be homely, positive and uplifting environments, which inspire the imagination and curiosity of all who walk through the front door. The hub of each Maggie's Centre is the over-sized kitchen area, where many gather for a cup of tea - walking into a Maggie's Centre is like walking into the home of a well-informed friend.

Maggie’s has a proven track record in delivering an evidence based programme of psychosocial support. This is offered free of charge, using a professional team comprising Cancer Information and Support Specialists, Benefit and Welfare Advisors, Nutritionists, exercise and art instructors and Clinical Psychologists.

Families will be able to use the centres’ programmes of support (including stress management courses, nutrition workshops and personal sessions), extensive libraries, access the web, or simply relax - taking ‘time out’ in the centre.

Maggie’s takes a unique approach which recognises that cancer affects different family members in different ways, and that their needs for support will change over time, reflecting the transitions involved in diagnosis, treatment and survivorship.

The Adam’s Hats and Maggie’s collaboration focuses on the needs of young siblings and friends of cancer patients. Young people tend to confront their own emotional and psychological difficulties but can be a very difficult group to persuade to access support services. While siblings and friends can provide valuable support to a person with cancer, their emotional and informational needs are often not recognised or met.

The collaboration will begin with a focus group of young people who have experienced a friend or sibling with cancer, to understand better their needs from their point of view. We want to hear how, where and when they want support.

Through this collaboration we want to see whether Maggie’s can contribute to the limited, but critical family support provided by the NHS and other charities. As the programme is run, the impact of this work will be evaluated extensively to learn how families use Maggie’s and what their thoughts of the programme are.

Additionally, our alliance will introduce a new element to the Maggie’s programme. We will be working through the design and evaluation of a series of practical workshops for parents, teachers and health professionals called “Supporting and Talking to Children affected by Cancer”. We also expect Maggie’s existing online support to extend and evolve through this collaboration.

The collaboration begins on 1 September 2009, with the use of Maggie’s Highlands (in Inverness), Maggie’s Dundee and Maggie’s Edinburgh being promoted formally to families from October 2009. We expect the series of specialised workshops to begin in January 2010.

2009-08-18T03:08:00.000-07:00

Go Orlando for Adam's Hats!

2009-08-18T03:06:00.000-07:00

Orlando Gibbons ran the British 10K in London in July, and raised a
wonderful £523 for Adam's Hats!

The picture shows Orlando and his mother Jo, running together, and
they did it in a magnificent 48 mins 15 secs.

Orlando was a friend of Adam's, having both attended the same nursery
in Islington, before they went to different primary schools.

Some friendships last forever, and Adam will have been smiling down
on Orlando and clapping him across the line.

Thank you, my friend.

2009-07-22T06:58:00.000-07:00

Bluehorse Event for Adam's Hats...

2009-07-22T06:48:00.000-07:00

For a number of reasons, we have decided to change the venue of the Bluehorse Classsical Equestrian Demonstration on 5 September 09 to Bluehorse's home in Cornwall, near Bodmin.

We very much hope you will still consider coming, and we are compiling a list of places to stay if you choose to make a weekend of it.

The programme will be the same as previously notified, and we do plan to hold a similar event in London next year.

Please see the detailed information below to book tickets...

Bluehorse & the charity Adam’s Hats have joined together for a fund raising event. Presenting Posh Portuguese Piaffe and a perfect Cornish Pasty. Saturday 5th September 09 6.30pm to 12 Midnight. Bosnieves Mill, Withiel, Bodmin, Cornwall.

BLUEHORSE (a creative approach to Classical horsemanship) Showing beautiful Lusitano Horses.

Followed by an Auction of promises and Dancing to Live Music.

Our aim is to raise funds for the children’s cancer charity, Adam’s Hats, dedicated to improving outcomes for young patients and their families. www.adamshats.org Entry £30 per person min donation to Adam’s Hats

RSVP by email by 17 July to ABELDR@BTINTERNET.COM for confirmation. Cheques payable to Adam’s Hats. UK Tax payers may Gift Aid by supplying name and address. Adam’s Hats Tickets, Priddacombe Farm, Bolventor, Launceston, PL15 7TY

THANK YOU!

2009-06-10T15:11:00.000-07:00

Dear All

Thank you so much for sponsoring me/us on the BUPA run. We all came in under an hour, not bad we thought!

I promise you that the £1500 we raised for Adams Hats will all go to support teenage neuroblastoma cancer patients and their families.

With best wishes

Richard

NEXT BANK HOLIDAY...

2009-05-06T01:15:00.000-07:00

'This is the route for Adam's Hats 6 runners on Bank Holiday Monday in the BUPA London 10K. Come and watch, or support by linking to their Justgiving pages - see below'...

RACE INFORMATION!

2009-05-04T15:30:00.001-07:00

The Bupa London 10,000 starts and finishes in St. James’s Park and uses Green Park as its assembly area.

The race starts on Birdcage Walk and follows an anti-clockwise route around the City of Westminster and the City of London via Parliament Square, Embankment, Blackfriars Bridge, Queen Victoria Street, Cannon Street, Great Tower Street, Crutched Friars, Fenchurch Street, Leadenhall Market, Cornhill, Queen Victoria Street, Puddle Dock, Embankment, Horseguards Avenue, Whitehall and via Trafalgar Square to the Finish in The Mall.

Runners pass many of London’s famous sights, including Westminster Abbey, Houses of Parliament, Big Ben, The London Eye, Cleopatra’s Needle, Tate Gallery, Millennium Bridge, The Monument, Lloyds of London, Leadenhall Market, Bank of England, Mansion House, St. Paul’s Cathedral, Horseguards, Nelson's Column and Admiralty Arch. Buckingham Palace acts as the backdrop to the start and finish.

Dave Bedford from London Marathon Ltd said: “We are pleased to be working with Nova to produce this exciting new road race, which will be a great addition to both the London Marathon and Great Run stable of events held in and outside London. The mass field will boast an array of elite, club and charity runners, and we fully intend for this race to become a landmark on the annual running events calendar in the UK.”

Brendan Foster from Nova International Ltd added: “We are excited to be working with London Marathon Ltd to stage this new event in the heart of London. Much of the course takes in the proposed route for the 2012 Olympic Marathons so you could hardly get a more inspirational location for the Bupa London 10,000. We are certain that the strengths of both organisations will combine to deliver what we are both best at doing; staging world class road running events.”

WHAT THE MONEY IS FOR...

2009-04-15T07:43:00.001-07:00

Moving quickly towards better treatment

At its meeting in Paris in March, the SIOPEN Board approved a new protocol drawn up jointly by European and US representatives of the study group looking at improved treatments for Adolescent and Young Adult neuroblastoma patients. This is a major step forward towards a clinical trial which will have the impressive target of improving the event-free survival rate at 5 years by 30% within this age group, where currently, it is close to zero.

Adam's Hats was instrumental in encouraging agreement at the Paris meeting, that within the detailed clinical trial proposal, and given the heavy burden of high doses of chemo- and radio-therapy required to attack the disease, including repeated components demanding that the patient is in isolation, there should be a requirement for psychosocial support to be available to patients. The Board also agreed that the growing body of evidence connecting appropriate environments for this age group, with improved quality of life during cancer treatment, should be included in the detailed proposal.

Let's get ready to support this project as it moves into its detailed planning stage, by sponsoring our runners in the upcoming BUPA London Run this May!

THE FINN HARRIERS...

2009-04-15T07:29:00.000-07:00

Tony/Richard/Claire/Andy

BUPA London 10K Run - Bank Holiday Monday 25 May 09

2009-04-15T07:26:00.000-07:00

Adam's Hats has no less than 6 family and friends running for us in this run through London on Bank Holiday Monday 25 May.

The Finn Harriers is a team put together by Adam's uncle, and Adam's Hats Trustee, Richard Finn, (see http://www.justgiving.com/andrewdickinson) and Joe Pose (see http://www.justgiving.com/joepose) is married to one of Adam's very first nursery carers. All long-term supporters of our quest for better outcomes for children with neuroblastoma.

As we move into a critical stage of the research we sponsor, the Adolescent and Young Adult project, please help our courageous runners reach their targets by gong to their JustGiving pages, and come and watch the run!

2009-03-16T15:41:00.000-07:00

‘Surely Captain Kirk should have pulled me out of here by now…!?’

2009-03-16T15:39:00.000-07:00

oh my god – you should have seen me at the end! That was only after 27k!

M A T T ' S M A R A T H O N 2 0 0 9 .

2009-03-16T15:30:00.000-07:00

Time: 03:46:16 (new pb)

Raised: almost £2000 and rising

The perfect start. Having overslept as I hadn’t changed my phone to Spanish time, I jumped up for my pre marathon breakfast, carried out final preparations, packed dry kit, jelly babies, drinks, energy gels……and jumped in a cab to the start. After the usual 25 minute toilet queue we got into position with the other 9500 runners and waited for the start. The start tme approached and a rousing ‘Barcelona’ by Queen (recorded version of course) played over the loudspeaker system. The song ended, the clock started and we were off. The first half went really well – a minute ahead of the pacemaker, enjoying the grey skies and light drizzle and generally feeling good. No real sign of my three injuries at this stage. We made the half marathon point in 1:45 – ahead of schedule but starting to feel it. The mental torment began and I soon started to pay the price for my pace in the first half. Around about the 25k mark my legs started to go and by the time I saw Sue and Alistair at the 27k mark I was really starting to suffer. From there on it was pretty bad, legs tired and plodding away, searching for thoughts to keep me going. The best two I could come up with were not wanting to give sponsorship back to people if I didn’t finish and how disappointed I’d be if I gave up. The clock ticked on, the kilometre signs came and went and eventually I saw the finish line. For the first time in a long run I had nothing left for a final sprint finish and plodded towards the clock grimacing – not a pretty sight I’m sure. For 2 minutes I leaned on my knees, not out of breath exactly but exhausted. I’ve never given so much physically in my life. I’m generally a bit disappointed with my time as I’d wanted to run 3:30 but still pleased that I hadn’t given up and that I’d managed to raise a decent amount for Adams Hats. It’s made me even more determined to break 3:30 next year in London – assuming I’ve recovered!

B L A S T 0 8 part three

2008-12-27T09:28:00.000-08:00

Following an auction of pledges which raised more than £25,000 for Adam’s Hats, guests were treated to a private set from international jazz musicians, Andy Sheppard and Kuljit Bhamra. We hope even more of our supporters will join us for Blast 10!

B L A S T 0 8 part two

2008-12-27T09:25:00.000-08:00

Dinner was interspersed with beautiful tributes to our work from Shami Chakrabati, Director of Liberty, who we were honoured to introduce as a new patron of Adam’s Hats alongside Professor Andy Pearson, of the Royal Marsden, and from Dr Peppy Brock, who emphasised the important role that Adam’s Hats now plays in sponsoring research for this under-served group of adolescent patients. Peppy explained the hurdles that must be overcome to gain attention to such a small group of cancer patients, and the crucial role that clinical trials play in securing new treatment protocols. She also showed how discoveries in one patient group inevitably lead to benefits for other groups, so support for Adam’s Hats projects potentially, has an even wider impact than on our target group alone. Shami Chakrabati brings passion and commitment to our quest for all children’s entitlements to be met, through attention to rarer, as well as common cancers. Andy Pearson’’s pre-eminence on the global neuroblastoma stage provides us with the guidance we need to be most effective and invest wisely in the improvement of outcomes for the tiny sample of older children who suffer the disease. We are privileged that they have agreed to be our patrons.

B L A S T 0 8 part one

2008-12-27T08:55:00.000-08:00

The magnificent venue of Christ Church Spitalfields saw 200 friends and partners of Adam’s Hats gather for the charity’s first major celebration of support, on the evening of 3 October. Blast 08 began with a drinks reception in the vestibule, stunningly lit in ‘Adam’s Hats blue’, with a harpist playing in the background.