Welcome to the Trust web-site for FAP and Genetic Cancers in the young. We hope that its content will be informative, hopefully convey the reasons why it has been established and explain why our objectives are important to many thousands of people in the UK.
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Nick Everton died on June 13th 2002, aged 17 years, from Gastric Cancer. He suffered from a variant type of FAP ( Familial Adenomatous Polyposis). Please read the History of Nick's Illness section (below).
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| This picture of Nick was taken only eight weeks before he died. He was aparently fit, healthy and very, very happy, with his whole life to look forward to. |
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The Trust has now been in existance for just over six years and with the help and generosity of so many people we have surpassed our initial fundraising target and now raised nearly £135,000 towards its aims.The huge effort from those individuals who commit hours of preparation work to fundraising events serves to remind the Trustees that we are by no means either alone or forgotten in pursuit of our aims.
Many people have asked me what the funds raised will be used for and I am pleased to report in reponse that we are now inviting applications from appropriate organisations for
Awards will be made up to a maximum of £25,000 to those organisations who can demonstrate that the funds will be used in order to achieve specifically agreed outcomes over time.
If you think your organisation can fulfil the above criteria and qualify for such an award then please write to:-
Richard Everton
The Nick Everton Trust
5a Lynton Park Road
Cheadle Hulme
Cheadle
Cheshire
SK8 6JA
Or email: bursaries@nickevertontrust.com
We are also shortly to embark on our first major project. This will see the establishment of www.F-A-P.net , an active web-site which will serve to act as a support centre for carers and sufferers of FAP and related pre-cancerous diseases. We hope that this will act as an information exchange and universal registry for all those touched by the disease, independant of but working closely with the NHS.
In doing so we hope that the resulting confidential data-base can ultimately be used to assist family profiling and further screening.
Thank you all for your continued support.
Kind regards .Richard Everton
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- To increase awareness of gastrointestinal cancer predisposition syndromes (such as FAP) in young people;
- To provide better and more accessible information on genetic polyposis syndromes and their symptoms;
- To promote wider and more regular screening within “at risk” families and, by improved screening, identify more of those at risk;
- To establish a nationwide counselling network for sufferers and their families;
- To assist research into cancers resulting from polyposis syndromes
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| News Update - September 2009 |
Bursary for post at Regional Clinical Genetics Department
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After many years of searching for the a worthwhile project for the Trust to support we have finally found one right on the door-step. Discussions with Dr Fiona Lalloo at the Genetics department of St. Mary's Hospital in Manchester and and Dr. Jim Hill from the Department of Gastroenterology had been ongoing for sometime about the need to utilise the data resulting from various colonoscopic surveillance procedures. Whilst the NHS can be a lethargic animal to deal with thankfully dedicated individuals within are not and eventually the idea of the post of a coordinator was created. Nick Everton Trust is proud to fund the post for an initial two years with matched funding from the NHS.
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| Screening of those "at risk" is one of our most potent weapons in early detection of cancer |
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About 10% of bowel and gastro-intestinal cancers occur because of a genetic disorder that confers a high risk on individuals of all ages. These include familial adenomatous polyposis (FAP), Lynch syndrome and MYH associated polyposis (MAP). These conditions all predispose to adenomatous polyps which, if left untreated, will develop into cancer. There is clear and convincing evidence that if patients at risk of these disorders undergo regular surveillance by colonoscopy screening and removal of polyps if possible, bowel cancer particularly can be prevented.
The Regional Genetic Service covers a population of 4.7 million offering a clinical diagnostic, counselling and molecular diagnostic service for familial bowel cancer. Recommendations are made about frequency of colonoscopic screening based on an individual?s risk assessment (either with or without molecular diagnosis through genetic testing) and the patient is referred to gastroenterology services within the region. If a pathogenic mutation in either APC, MMR genes or MYH is identified, colonoscopic screening is suggested. Although a database of patients with or at risk of bowel cancer has been in existence for some time , it has not previously been employed to manage the screening process of high risk individuals.
Fiona Lalloo - Consultant in Clinical Genetics at the Manchester Regional Genetic Centre said..."The appointment of a familial bowel cancer administrator will result in the further development of this database to facilitate organisation of screening for at risk individuals, ensuring that they are screened at the appropriate time intervals. It will also enable the accurate collection of data resulting from such screening and help to establish a better understanding of the natural history of these diseases and enable further more effective research into pre-cancer polyposis sysdromes.
Support for this post by the Nick Everton Trust will fulfill two aims of the trust:
To promote wider and regular screening of those at risk by the establishment and maintenance of more robust systems of recall and rationalisation of contact with patients.
To assist research into polyposis syndromes by collating data on clinical and molecular phenotypes with screening data. It is expected that the administrator will liaise closely with the endoscopy units both regionally and nationally which will facilitate collaboration between centres"
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| Trusts name on local team kit |
The lads of an under 14 football team in Cheshire are to proudly wear the name of the Nick Everton Trust on their shirts for the next three years. Mountfield Rovers, based in Bramhall, is the team in which Nick's younger brother Sam plays. Nick was a keen footballer himself and was the prime reason why Sam took up the sport. Let's hope that the name helps to bring them all the success that thier hard work and enthusiasm so justly deserves.
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| The boys of the Mountfield Rovers Under 14 Football Team |
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| Helen Everton pictured here receiving last year's donation. |
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Year after year the amazing " Mellor Marchers" continue to trudge the moors and country lanes of Derbyshire to raise funds for a variety of good causes and charities. The Nick Everton Trust is both privileged and honoured to receive support from such a committed group of people. We all know just how much effort is required to organise any fund-raising event and we are extremely grateful to the people of all ages in Mellor and miles around for their continued support. In particular we would like to thank Mr Mike Cortvriend and the sponsors of the event for all their hard work.
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| The School Crest |
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The Trust's name is to be taken to the south of Spain when it will be proudly worn on the chests of members of the Under13 and Under 14 Cheadle Hulme School football tour. A parent of one squad member has kindly supported the ongoing promotion of sports at the school by donating towards the cost of the entire kit. The kit will bear the name " The Nick Everton Trust" alongside the school logo.
The boys will travel to the ground and training camp of Spanish League team Villa Real for a skills development programme which will include sessions with first team players over a period of 5 days. This will certainly be a trip to remember with Villareal being currently facing Arsenal in the quarter finals of the European Champions' League 2009.
Nick Everton was a keen sportsman at Cheadle Hulme School and also attended a similar event in 2002 when the first and second eleven football teams travelled to Portugal for a similarly intensive training tour. Sadly this was just a few months before he died but he and his friends had a fantastic time.
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From the bottom of Britain to the top on six wheels in just 6 days.
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| Pictured above, at the very end of their journey, pier-end at John O Groats, are Andy Llewellyn and his brother, Gareth, along with Rob Ferguson. ( We do not know what became of the other two bicycles! ) |
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These three intrepid cyclists, armed with little more than two wheels each (and a puncture repair kit!!) left Lands End, in Cornwall at lunch time on Friday 7th July and arrived the following Thursday evening in John O Groats, Scotland, covering over 918 gruelling miles in the process. On the longest individual day, from Ross-on-Wye to Standish, they covered an amazing 155 miles. Even the shortest cycling day, the first from Lands End to just over the Devon boarder took them 110 miles. Well I suppose it took them time to get going!!.
Andy confided, “despite what it may sound like it was a really brilliant week, with great company along the way, and travelling right along the country really brings it home to you what a fantastically varied and picturesque country we live in”.
In completing the journey they also raised a fantastic £1,440 for the Trust which is a great acheivement.
Once again I am humbled by the commitment of others in support of the Trust which is still being received even though it is almost 5 years since Nick died.
Thank you all so much.
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| Stockport Primary School Chooses Trust |
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| Richard Everton receives the first cheque from Linda Cooper (head-mistress) |
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It continues to overwhelm us when we discover that people have spantaneously supported the Trust in its fund-raising. Most gratifying of all is when this involves the participation of young children - because the Nick Everton Trust is all about helping young people. One of the best examples must be the Alexandra Park Junior School of Edgeley in Stockport who have adopted the Trust as one of its favoured charities for this year, donating 10% of all monies raised to help our aims.
The first cheque for the sum of £115 was presented to Richard Everton during the school's recent Harvest Festival when a group of 350 extremely well behaved pupils at the school listened attentively while Richard talked about Nick and the Trust.
Recently a further cheque for the fantasic sum of £268 was presented which represents the committment of the school to helping others. Thank you all once again.
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| Grateful thanks for other recent support and donations. |
- Football Writers Association ( Northern Chapter) for £2,000
- Clair Muir - Raised over £500 by running the the Wilmslow Half Marathon
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| Patrick Hart Runs 2004 London Marathon in Aid of Trust |
Sunday 18th April Patrick, a great friend of the Trust, today joined 32,000 other people who put themselves through this gruelling feat of endurance and determination to help raise money towards the fight against cancer. Today represents the culmination of many hours of training that has to be devoted to the task in order to reach the finish line. Millions of pounds will be raised as a result of todays event for a host of worthy charities. We are grateful that Patrick should consider the Nick Everton Trust to be such a cause and for the money he will raise.
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Patrick, seen here sporting his competitor's medal , pounded the streets of London for 4 hrs and 44 minutes to complete this testing course, shaving 7 minutes off his previous time for a the event. To add to this fantastic acheivement he expects to raise nearly £3,000 for the Trust..
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| Manchester "Gig" Raises £250 |
The students at Cheadle Hulme School continue to remind us that the death of a popular fellow student will not be easily forgotten by choosing the Nick Everton Trust as their dedicated recipient for the proceeds of both in and out of school events. It is both a tribute and a testament to the school and its culture that nearly two years after Nick’s death donations are still being received and events organised in his memory. One such example of the unselfish enterprise, shown by so many at the school, was the recent “Gig” ( that’s a Pop Concert to you and I ) promoted and organised by Rachael Gray, Lower 6th. The event, held on the 22nd April at the Retro Bar in Manchester displayed the burgeoning talents of 4 local Stockport bands, together with a headline act from Preston. Rachael convinced the owners of the café/bar to let her use the venue FOC and despite fierce competition from other music venues on the night, filled the place to near capacity and raised £250 for the Trust in the process. Rachael can be very proud of her success, since those of us who organise similar events know the pressure, worry, heartache and enjoyment it can bring, as well as the relief when it is all over!. The huge effort from those individuals who commit hours of preparation work to such events serves to remind the Trustees that we are by no means either alone or forgotten in pursuit of our aims.
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FINANCIAL DONATIONS THE TRUST TO DATE Thanks to the generosity of so many, at 28th October 2004 nearly £125,000 has been raised by the Trust . Any person wishing to make a donation is asked to do so care of :- The Headmaster
Cheadle Hulme School
Claremont Road
Cheadle Hulme
Cheadle
Cheshire
SK8 6EF
Please visit the school web site
If you wish to make a donation or contribute via other means please e-mail us
Or you may telephone Richard Everton on +44 161 488 4420
We can now accept donations by direct transfer into the Trust bank account. If you wish to do so please use the following details:-
Account Name:- The Nick Everton Trust
Sort Code:- 07-00-93
Ac.No:- 33333334
Account Ref:- 0788/703303609
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Sadly, this year, pressure from other committments did not leave us sufficient time to devote to organising what has become a popular annual event. However for all those kind people who have pledged their support or enquired about the Ball I can assure them that we will run another event soon.
We are seeking for a venuw somewhere in South Manchester or Cheshire where we can errect a marquee - which will accommodate 400 people - so any assistance would be gratefully received.
Last year's event, again at the Palace Hotel in Manchester, was supported by over 300 people and raised another £11,000 for the fund. Fine performances by Vicky Nolan and Richard Fleishman set the tone for the evening's entertainment and once again Robbie Williams topped the bill.
Special thanks to Paul Boardman who travelled all the way from Plymouth to give us his special brand of humour. A very funny man and what a nice guy.
Thanks also to all those businesses and individuals who either donated raffle prizes, items of memorabilia or helped on the night to make the evening a great success..
Once again a huge thank you to everyone who attended - especially Nick's former school-friends.
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Cheadle Hulme School - Charity Hike and other Events
For the third year running since his death Nick's former school has continued to raise funds for the Trust. It is a lasting tribute to Nick that he is remembereed so fondly by many current and former pupils at the school and that the memorial Trust set up in his name is still supported in this way.
Although we have not yet been told of the total sum raised we are aware that through the generocity and athleticism of many people at the school a substantial sum was raised. We understand that a significant donation is to be made to the Trust and would like to thank anyone who participated or supported the event for doing so and continueing to help us achieve our aims.
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| The History of Nick's Illness |
Just over Two years before his death Nick was diagnosed with a syndrome called Familial Adenomatous Polyposis (FAP) which is an inherited pre-disposition to form polyps ( like small cysts) in the lining of the large bowel or colon. FAP results from small changes in the structure of certain genes in a persons DNA - modifications which we are all susceptible to from conception. Over time some of these polyps may become enlarged and turn cancerous - although this had not yet occurred in Nick and is extremely rare in young people below the age of 35. The problem usually remains localised in the bowel and it was previously considered highly unlikely that other tumours would occur elsewhere in the body as a result of FAP and particularly in the stomach of one so young as Nick.. The stomach is therefore not routinely investigated in FAP sufferers. The recommended management of Nick ( in common with others of his age) was by annual colonoscopy – internal fibre-optic investigation - to monitor the number and any change in the character of polyps in the bowel, pending later consideration to surgery preventative removal of the colon at an appropriate time, possibly on completion of his A-Levels or University course.
His last such colonoscopy, carried out in December 2001, showed no appreciable changes and his family were all very relieved at that time, since the short-term outlook was extremely positive. No link has yet been definitively established between Nick’s FAP and the Gastric Cancer he contracted, however comparative data is insufficient and research simply not far enough advanced in the UK to absolutely rule it. This, for many in the population, creates an unacceptable unknown - and it is impossible to conceive that Nick was simply the unluckiest man on the planet. Current evidence suggests that the incidence of FAP in the UK population could be as high as 1 in every 2,500 people, which would mean that there were nearly 25,000 sufferers in the UK. Bowel Cancer currently kills 16,000 people in the UK each year with around 100 new cases are diagnosed each day - and you don’t catch bowel cancer. If polyposis is left untreated into middle life it will cause Cancer. FAP sufferers are, therefore effectively walking around with a genetic time-bomb inside them which is programmed to “go-off” when detonated by an, as yet, unknown catalyst. Yet screening is inconsistent, awareness is low and research poorly coordinated. This situation requires changing and is the underlying reason why we have established the Nick Everton Trust in his memory. To ensure that his tragic death will be marked and used for some positive purpose to help other young people like him avoid similar suffering and to continue his own ethic of helping others. Don't let Things Go If you are a young person and have had any symptoms which you are worried about such as bleeding from your bottom (other than piles), consistent and severe stomach pains, accompanied by changes in your toilet habits, then please go to the doctor. It may be nothing but its worth getting it checked out. You can also click on one of the links below for further information. If you wish to receive further information on FAP or have any suggestions on how to further the aims of the Trust or ideas for events please contact us or complete the e-form below.
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Many people are interested to further understand exactly how FAP can affect young people. PLease see later for additional information or use the e-mail link above.
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At his funeral Many tributes were paid to Nick including this poem written by his close friend Kit Yates.
Don’t Fall Down Just Yet
Don’t fall down just yet
I need you to stand up
Don’t give up on me
I haven’t had enough
So many words unspoken
So many deeds undone
Our lives have just been walking
But we just learned to run
Don’t let it go too easy
Don’t let it slip away
It feels like we will be together
Forever and a day
Walk with me just one more time
I’ll make it worth your while
Tell a joke and make me laugh
I’ll try to make you smile
Dream with me in foreign fields
Of adventures yet to come
Work with me and side by side
We can catch the sun
We can make a new day dawn
And never let it set
I need you by my side forever
So don’t fall down just yet.
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His father also said the following words.
A Tribute to My Beloved Son – Nick
Although I stand here for a reason which I am not yet totally clear and in circumstances the enormity of which will take many years to come to terms with. I am reminded of the time when I asked Nick at the age of 14 to read an appropriate passage at my wedding three years ago to my current wife Julie..
It was a short piece which I had only handed to him that day and he was, of course, nervous about performing this important function for us. He was, however, determined to do it.
The time came in the proceedings and he approached the pulpit, opening the A4 paper on which the prose was written as he walked. As he looked down to read, Nick prefaced the recital with a deep breath, followed, under his breath with two words, seldom uttered in church but I am certain audible to many there present, one containing seven letters starting with “F” and the other shorter, starting with “H”.
He then went on to read the piece beautifully.
I think that this moment summed up Nick
Commitment to performing a task he had promised to complete for someone for whom he cared.
Courage to face a new challenge or problem
Never shirking a responsibility bestowed on him or avoiding an obligation he had taken on .
Honesty and openness in his approach - and unafraid to convey his feelings.
And, of course, a disarming smile which meant that whatever he did it was difficult for anyone to take offence.
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As a parent one is not always exposed to, or aware of the evolving character of your children and it is often only the testament of their friends and others which enables you to know the person they have become.
It is quite clear that a parental relationship differs from the friendships which they forge with their peers and others and one doesn’t always recognise those emerging qualities which every parent seeks in their child .
Quite rightly they use you as a sounding board from which to react, blossom and grow. A platform from which they can spring out and experiment.
Therefore, the kind words and comments made to us and letters received, both leading up to and after his death, from his friends and their families, have provided great solace for us all and also an insight into and understanding of the person Nick had become - a perspective of a child which as a parent one doesn’t always gain access to.
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With Nick what you saw was what you got.
If he was angry with you he told you, if he paid you a compliment it was unfettered and if he told you he loved you he meant it.
If he disagreed with you he did so fervently and, as many will recall, in a particularly animated form, normally accompanied by an interesting windmill effect of his arms - healthily spiced with melodrama.
When Nick said to someone “how are you” he would wait for their answer and listen to their reply. .
He would cross the street to acknowledge even the merest of acquaintances or to give any beggar or wanting person my last pound.
Although street wise he had a refreshing innocence which seemed to make deceit or pretence difficult for him.
If he was determined to do something and interested he would achieve it , this ranged from kicking a foot-ball with his left foot to eventually getting Amy to go out with him again after treating her so terribly badly.
Nick would have a go at anything ( except exotic food that is ) and was never afraid of failure or looking foolish.
He hated Trivia, including hanging up clothes, equals signs and workings in mathematics and washing up .
He was happy to take on the responsibility of others and would spend hours clocking up my phone bill in pursuit of their happiness
And he was unafraid to show his own emotions or cry at a sad film.
He did everything a growing lad should do. Including, after a drinking binge with his friend Kit, redecorating our house with vomit, when they were 15, in a delightful Hock and Chocolate hue.
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When he was given the news about the aggressive nature of his cancer and the rapidity of its spread Nick asked me if it was curable, I had to tell him, that on the advise of all of the doctors and consultants we had sought, it wasn’t. When I told him so he looked straight into my eyes, paused and simply said ok. As with every problem Nick encountered in his life he stared death square in the face and said “come on”. He didn’t cry nor was he angry.
This monstrous illness, this vile and relentless terminator was simply destroying my son and has taken, I believe, one of life’s beautiful and treasured people. In doing so the cancer ravaged his body but as I, and those close to him at his death, will bear witness, it could never destroy his spirit. And this spirit lives on in the inspiration he gave.
This was the most humbling experience I think I will ever have and by his stoicism and defiant courage, I had to tell him that he was simply the bravest man I have ever met.
And I know that if he had been given even the merest of chances he would have fought with all his strength
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Some have asked if I feel cheated about having been deprived of seeing my son grow up into a man - my future with him stolen.
Initially I answered yes but now I don’t feel that.
He had, I believe, already faced this potential conclusion. Despite this he still lived an active life and indeed I think the threat of disease made him even more generous with his time than selfish.
The courage that he displayed and the closeness which we shared both during the illness and approaching his death, I will never ever forget.
I have therefore known my son as a man and a far better man than I.
And in these tragic circumstances I cannot help but admit that I am filled with such enormous pride that he was my son.
He put up with the most unspeakable personal degradation and, for a young man who was so fastidious with his appearance, this must have been impossible to bear.
But still he kept his dignity and personal pride, Moreover he continued to show concern and care for those close to him throughout.
This generosity extended to his brother Charlie, with whom he asked to be left alone when he knew his outcome. Although they fought like cat and dog Nick was immensely proud of Charlie and I know that they loved each other. He told him that whatever had gone before he shouldn’t worry because he would certainly come back and haunt him. I believe that this was meant to comfort him.
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Nick gave to others the most valuable commodity that we have at our disposal because it is so finite. He gave them his time.
In doing so and listening to others he seemingly generated great love and this never dies because besides time, love is all there is.
And it is the power of human love and compassion which has been so spectacularly demonstrated to me both during the time leading to his death and after it, in which I vest my faith. Thereby my son has changed my life.
AMY
You are a magnificent young woman and a credit to yourself and your mother Sandy. You lost your father to this undiscriminating disease when you were 10 and you have endured Nicks illness side by side with us. You are a shining example of courage and absolute commitment to the young man you so obviously and completely loved.
Sandy you welcomed Nick so wholly and completely into your home and your family and gave him so much happiness in the last months of his life. This is despite admitting that you could have cheerfully strangled him when he finished with Amy and ruined your New Years Eve in 2001
Knowing Amy as I now do it was inevitable that the two of them would be together and I only feel cheated for her because I know that they were planning a future together . This is so cruel for you.
HELEN - despite being completely distraught and confused at the unjust nature of the selection of her son for such torment and torture you maintained your caring and your calm with him in hospital.
JULIE - with your love and inner strength you have held this family together during Nicks illness and after his death. You are truly my rock and I know that he had a very special love for you
MARK, Helens Partner for whom I have enormous gratitude. He was with us throughout and he helped care for Nick whilst he was suffering many of the indignities that this vile disease perpetrates, as if he were his own.
SAM
What you said was right about your brother being a shining star. Sam, now seeks to gaze at the sky each night in search of Nick who he says will be the biggest and brightest star of them all.
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Nick loved all his family
When the fourth brother Jack arrived Nick was the first to come and see him and even though he wanted him to be a little sister he took solice in the fact that since Sam was obviously going to play football Jack could become a rugby player and he thus had the best of all worlds.
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Many in his school have mentioned to me how Nick was always a common link between the different factions and cliques that inevitably develop in a large institutions like CHS. Nick seemingly got on with everybody and thus was able to create bridges between different groups. It is this ongoing ability to ignore the trivia of life which I believe has helped myself, Julie and Helen overcome potential conflicts and become one extended family.
He made friends easily but never took them for granted. He could converse with anyone and was comfortable in any type of company neither being intimidated or patronising -- simply being himself.
He was always the peacemaker and the “match-maker” .
He would give this time selflessly and without thought of reward or benefit, in volunteer work, which included working in the children’s hospital and ironically giving his time to cancer research.
And of course he was a committed football fan.
When England beat Argentina a couple of weeks ago Nick didn’t manage to watch the whole match, in fact he only saw the first five minutes , the goal and the last few kicks because he was so ill. But on the final whistle he still managed to clench his fist and punch the sky.
I always nagged Nick about managing his time, particularly when it came to revision and school work but it seems that he gave so much of his time to others that there was little left for himself.
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Any parent wishes of course to believe that their son is a good and caring human being, but Nicks effect on those he touched has been communicated to me by so many that I know it must be true and I will miss him terribly.
I’ll miss him consistently breaking our double bed whilst choke slamming my then three year old and I’ll miss him playing football in the house and smashing ornaments.
Ill miss him kicking a ball with his left foot full pelt against the patio windows, I’ll miss getting up in the morning and finding that he’d drunk all the milk, I’ll miss him lolling like a beached whale on the settee
I’ll miss the frantic phone calls from his mobile “Dad can you pick me up “ , “ Dad , call me back” or my favourite “ Dad , can you lend me £50 quid”
. And I’ll miss the sound of Oasis blaring out into the garden with the windows open and him singing along and air drumming.
But most of all I’ll miss his smile
Son you are my idol, I am honoured to have known you and privileged to call myself your friend. and if I can demonstrate just some of the qualities which you a shown in your short life then I will be truly worthy to be your father. Good bye Son. I love you.
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Nick's family take great solace in this expression of kindness and compassion and see this as evidence both of the effect that this tragedy has had on so many and the support for the Trust's cause.
We intend to devote a great deal of our time to both fund raising and to highlight the effect that cancer has on the young and their families.
Please continue to support us - our sights are very high - and be assured that all funds raised will be directed towards a good use within the aims of the Trust.
Please revisit the site again to monitor how the trust performing and our proposals on how to use the funds generated.
again, We would be very pleased to receive any comments or offers of assistance. Thank you !
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Nick, pictured with his girlfriend Amy just 3 weeks before his cancer was diagnosed. The picture was buried with him at his request.
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