Family Day 2016

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The donations and funds raised by the Thames1000 will allow us to organise a Family weekend in October 2016. Dr Les Biesecker has agreed to attend and in previous years this has been an amazing opportunity for individuals and families to benefit from his knowledge, experience and support.  Les can also provide you with an update on the drugs trial.

Please could you register your interest by emailing me at:

Fundraising Update

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We would like to thank the Friends of the PSF UK for their regular donations.

Mae Stroshane

Pickwick Lodge

Julia Kobrin

David Beere

Joseph Drake

David Ramsden

Samatha Gilmore

Debra Catt

Paul Kendall

Helen Lindsey

Debbir Elliott

Tracy Woods

Laura Richards

Mandy Sellars

Karen Thompson

Huge thanks to the Rose Charitable Foundation

The Thames 1000 event , raised over £6,000 for PSF UK, along with a similar sum for two other charities.  The fund raising effort was organised by the Rose Charitable Foundation. Shown here are some photos from the final day of the event; the fund raisers met by the Mayor & Mayoress of Southend-on-Sea and our new Patron Joseph Drake with the Mayor.

Funds raised by Scott Collins by selling PSF pin badges

Funds raised by Scott Collins by selling PSF pin badges

Andrew Myles- raising funds by participating in the Edinburgh Half Marathon

Andrew Myles- raising funds by participating in the Edinburgh Half Marathon

Fundraising update – July 2012

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PSF UK has signed up the Giving Machine

This means you , your friends, family and colleagues can shop and the charity can benefit!  All you have to do is go to websites via the giving machine website, choosing PSF UK as the chosen charity!

It’s really easy I tried it when I bought a book from Amazon!

Shops on their site include:

Amazon, Ebay, Sainsbury’s, Tesco’s, John Lewis, Next, M&S, Argos, Debenhams, Asda, Boots, B&Q



Jackie and her 3M colleagues raise £1,350

Jackie Ayto came to Family weekend and vowed to raise money for the PSF UK. She was as good as her word and her and her colleagues at 3M raised a whopping £1,350!  They held a Christmas fair over two days and had homemade cards, sweets and cakes for sale together  with a tombola and lucky dip.  Jackie said her aim was to raise £500 but with help from the 3M Care and Share scheme, she smashed her target.  She said that colleagues were so supportive and generous.


Debbie Jackson and the Gateway Centre in Bradford

raised £760 for the PSF UK


Crowhurst police station (Brighton)

donated £100 from their tuck shop – thanks to Kirsty and Chris Neal and their colleagues!


C&C Marshall Limited

– dress down event


Collins annual cream tea

– £105 raised for PSF UK


Sue Rowlands

raised £150 for the PSF UK

Fundraising update – Sep 11

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Huge thanks to Kirsty and Zoey (Jordan’s auntie and cousin) who held a sponsored swimathon and raised an amazing £627.12 for PSF UK.  They swam one and a half miles to raise money for us.  Thanks ladies!


Thanks again to Kirsty who arranged for proceeds from the station’s new tuck shop to come to PSF UK – £100 received with grateful thanks to everyone at Crowhurst Road Police station

Ellen’s fete

Jordan’s friend Ellen organised a fete in Jordan’s honour to raise money for PSF UK.  We had to keep this a complete secret from Jordan who was very surprised to find Ellen dressed up as a bear and to find family and friends there in support.  Thank you to everyone who came – the morning raised £140

Ellen and her friend stayed up all night baking! Thanks to Mary and everyone who helped out!

Crazy Golf

Colleagues from CSA arranged a Charity golf event and raised £360.40

It was lovely sunny day and everyone enjoyed themselves. There was also a raffle and beautiful cakes courtesy of Lynn Meadows

Huge thanks to the Charity Committee, Anna Evett and Andy Godfrey and to all who took part.

Collins’ strawberry tea

Donna & Paul Collins thank all their friends for their support at their Proteus Syndrome Foundation UK Strawberry Cream Tea.  Special thanks to Lesley, for the Scones, to Karon for her hard work with the drinks, to Carole for the ‘loan’ of the tables & chairs and to Scott for handling the raffle tickets & entrance money.  They had just over 30 people popping in during the afternoon.  Many other friends also passed on donations abd the event rasied £236.


Benfleet Baptist Church Coffee Morning – raised £305


Staff of C J Coleman & Co Ltd. – Sale of Second Hand Mobiles £215


C & C Marshall LTD – Mufti day raised £36.55


P Sturge, Taichi Coffee Morning, raised £70


Paul and Donna  – fundraiser party

On 15 March 1986 Halleys Comet was to be seen overhead, Diana Ross,singing Chain Reaction was the UK no 1 and Paul & Donna got hitched.  What is the best way to celebrate but by holding a big party and invite family and friends to celebrate the event.  Family from Scotland , London & Kent joined our good friends for a wonderful party on Saturday March 19th at our local hall.  The happy couple lead the evening by dancing again to Jennifer Rush’s ‘Power of Love’ and was joined by the Best man and Chief Bridesmaid on the dance floor.  Of course, the big change was our three boys who celebrated with us and we decided that we did not want any presents, so all those that were invited were asked to donate to PSF UK .  So Ross’ godparents, Geoffrey and Andrea took on checking the money and chasing after those guests who were able, to complete a Gift Aid form.  The net result was a marvellous £1,060 raised on the night and with Gift Aid, the final total to be over £1,200.

We were so pleased to do this for PSF UK, as the charity has been such a support to Ross and us over the years….and we all had a great time dancing the night away… for the next 25 years!!!

Paul & Donna

Fundraising in the Falklands!

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When Jordan’s form teacher Jo Symons left the school to start a new life in the Falklands with husband Mark and son Miles, she started to spread the word about Jordan and the PSF UK! Mandy Ford from Stanley in the Falkland Islands wrote to me explaining that some kids had done a 14 mile walk for us. Caitlin, Kieran and Jessica organised the walk which was across country in miserable conditions but they did it in in 5 hours and raised £160 for the PSF UK – thank you all so much!!!!!!!!!!!!! They were joined by Tasmin, Javiera and Clodagh

The Band Night

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Huge thanks to Adam Taylor who decided to organise a fundraiser for Jordan following his second amputation.

Thank you also to the following people:

Colin, Paul and Denise Taylor for manning the hectic Raffle stand!
Everyone who donated the amazing raffle prizes

The awesome bands:

Dirty Scarlet
Dean Calm
Tonight We Fly

John Cruttenden from Suspect

Andy Godfrey for the poster design

Graham from the Ultimate Alternative magazine for advertising the event

Janet at Prontaprint for the flyers and posters

Everyone who came and supported the event or those that could not attend but made a donation anyway!

The Atha Bar for the venue

Nigel and Suzy for the PA system

Over £2000 was raised by the event – Jordan is saving the money up as he wants to visit family in Australia.

Charity Fundraiser – Sat 4th July

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For more information visit:

Fundrasing update ’09

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Sue Rowlands lends further support

Hello Tracey

Just a quick message to say that on Friday 3rd October I had an open day at my house, selling cakes, cards, mobile phone charms etc. I also had a raffle, which has been drawn, and I am about to deliver the prizes to the winners. I am very lucky to have such great support from my sister and all my great friends. In total I have raised £300.

Since then I have had requests for my cakes so will be busy making them. I have also had the offer to put cards in local hairdressers who will display them on the counter; all proceeds will of course go to PSF.

Hope you are all well especially Jordan.

Love Sue x

Norma Lodge

We received £710 from Norma Lodge, thanks to a work colleague of mine Pete Richards, who nominated our charity.

Sarah Selwood and Donna Padmore – Keyline brands

These ladies raised an amazing £2031.70!

Hi Tracey

The evening went really well, we had approx 90 people attend and raised £2031.70 this includes the £481.70 coming directly from Unilever. We had some fantastic auction prizes which included the New I Pod Touch donated by my company, which raised £200 in the auction, other auction prizes included a friend Donna Padmore who is a Beauty Therapist, she auctioned herself for a Champagne Pamper Day for 4 friends, this raised £145. My hair salon in Weybridge donated a full colour cut & blow-dry, this raised £90. Donna, who organised the party with me, got loads of local companies to donate meals, champagne etc for the raffle, which was so successful. The strangest auction was a last minute entry – Donna’s husband is a taxi driver and the morning of the party he picked up the guy that used to play CatWeezle and got his autograph a friend of ours, Mark Jones, bid £25 for it, think he was under the influence of alcohol!!

Love to the family

Sarah x

Ian Barnet and Live in the Valley – the Big Fat Beulah Bash

I was approached by Ian who supports young bands and singers in the local area as part of an organisation called “Live in the Valley”.  They performed a charity gig at a local Baptist church raising money for Cancer research and PSF UK (in honour of Jordan).  Artists line up was as follows:
Frequency, Vicky Bass, Friday Club, Temba Dawn, the Arcadian, Some People, Exus and Offhand.

The event was held on 29 March and we went along with our boys and family.  They raised £238 for PSF UK and a good time was had by all!

Bexhill High School

Jeanette Pollitt who organised the activities wrote the following for the local paper:

Year 8 students at Bexhill High, based at the Gunters lane site, worked hard to raise £400 for the charity Proteus Syndrome Foundation UK. The group currently helps over 50 families in the U.K and Europe.
Proteus Syndrome is a condition that involves atypical growth of the bones, skin, and head. It is a very rare, variable and progressive condition, affecting more males than females.

As part of their Enterprise curriculum, the 60 students devised and carried out a number of business / money-spinning a activities in order to support this charity, one very close to their hearts, as a fellow Year 8 student, Jordan Whitewood –Neal, is a sufferer of this rare genetic disorder.

The students worked in small teams to design, advertise and run their ventures which included washing cars, cake and tuck sales, games sessions, and even a very popular chocolate fruit fountain!

Jordan and his parents were invited to receive the cheque from Mrs Jeanette Pollitt and the students in a special assembly.  Mrs Tracey Whitewood-Neal, chairperson, was most impressed with their efforts and offered her congratulations and appreciation on behalf of the Foundation.

Mazars LLP

Thank you to Phil Waller and Mazars for the donation of £250 in honour of Joel Hales-Waller

Nick & Gaynor – Hastings half marathon

Raised an amazing £574.71 for PSF UK – cheque presented by our friend Barry Towner on their behalf.

Duncan Streeter – Hastings half marathon

Duncan has been supporting us for years and raised another £171.00.

Royal Bank of Scotland – Essex branch

Had a dress down day and raised £500.

Allstate Northern Ireland

Raised £847.50.

London to Brighton Bike Ride

Richard Pucknell and Pete Cardinal raised a staggering £484.52.  We took Jordan to meet them at the end of the race.  It was a beautiful day and Jordan had fun holding Lottie (Pete’s baby girl).  Thanks guys, hope it was worth all the hard work, sweat and tears!  Thanks to Charlotte’s mum Jenny for all her hard work and encouragement for the lads.

Collins Quiz

The “QuizMasters” did it again raising £210.

Roger Finch

Raised £150 – Mazda London Triathlon.

Benfleet Methodist Church – Coffee Morning

Raised £130.

Grant Davis Limited

Raised £58 from their dress down day.

Joel raises money from his hospital bed

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A six-year-old patient at Birmingham Children’s Hospital has raised £735 for Children in Need by making his own Pudsey souvenirs.

To watch the story, please go to:

Fundraising update

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Companies and Groups

ING Wholesale bank

How strange are fate and chance encounters? We met Sue Maynard (vice president service management at ING) at our last Family weekend. Sue and her friends were very touched by seeing the children so clearly affected by Proteus syndrome, but nonetheless enjoying life to the full!

Employees of ING raised an amazing £7664.23 by running the London Marathon in 2007. Our PSF Treasurer Paul Collins went to collect the cheque. Here is what he had to say:

“Hi Tracey,

Forgot to tell you who is who in the photos. Lady on my right, in white, is Sue Maynard, promoting PSF to her colleagues at ING bank. The lady on my left in predominately orange, is Kim Jennings, who a runner with the ING London Marathon team and the sponsor for PSF UK as a participating charity in the ING fund raising effort. Apparently ING hold other events, such as a quiz night and pitch and putt (in their offices) that build up collecting funds that culminate in the London marathon.


CJ Coleman & Co

Raised money in lieu of Christmas cards

Lloyds charitable trust

Again thanks to Paul Collins (dad to Ross Collins) for collecting the cheque for £1000 on our behalf. Our heartfelt thanks to Nik Gooding and Lloyds.

Genesis technical recruitment

Donation of £100

Smith Child Lodge

Donation of £100

Bexhill High school

The learning support team raised funds in honour of Jordan by making Christmas cards and by a raffle at their musical show.

Claimar Care Ltd

Donation by an employee of £20


Our thanks to Dave Stannard and OPM for their donation of £200

Fundraising events

Roger FinchRoger finch – sponsored Triathlon

Our heartfelt thanks to Roger who raised an amazing £479.77 through his energetic efforts!

Rachel Davis – musical showcase

This event raised £575 with the help of Mandy Sellars

Rachel, who is a freelance music tutor wrote:

“Dear Tracey

Please find enclosed a cheque for £575, the result of a fundraising event organised by myself and my students with the help of Mandy Sellars, a friend of mine whom I believe you know. We hosted a musical showcase evening in which 27 students took part. The money raised came from ticket sales, programme sales, a raffle and a quiz. Mandy also wrote an informative piece for the programme and distributed flyers, as we wanted to raise awareness as well as funds. The audience response was extremely positive and I hope you will agree the event was a success, kind regards Rachel”

St Louis Catholic Primary school

The school put on a Christmas concert in honour of Dillon Chapman and raised £320.78. I received a lovely card from Dawn, Dilllon’s mum:

“Dear Tracey

A big hello to all and Happy New Year. Please find enclosed a cheque for £320.78 raised at Dillon’s Xmas concert for school. They did a 10am and 6am concert with a collection at the end and nominated “Proteus” to receive the money. We were thrilled.”

Many thanks to Mr Triggs the headmaster and all involved.

Mrs M Whitewood (Jordan’s nan) and Joanne Luck (Jordan’s auntie)

Further sales of homemade cards brought in another £93 for the PSF UK, that’s over £300 to date or around 1200 cards!

Keyline Brands

Grateful thanks to Sarah Selwood and her company, Keyline for sponsoring this year’s charity ball. Their £250 donation sponsored one of the events evening auction prizes, a Mud and Mayhem voucher for four people by Adventure Sports.

SWEET SUCCESS – Claire Raynor (Tracey’s sister from Australia)

I had not entered the fundraising arena before so went for something easy – selling chocolate! When I first picked up the 12 boxes of freddo frogs, caramelo koalas and various others; I did wonder if I was going to be 15 stone before long, however, they sold really well. Tips for selling chocolates; wait until approximately 4pm and send an email out telling everyone you have chocolates on your desk (evil, but effective). I also had help from family and friends; although they did enquire as to whether if I was going to help them out by buying them a subscription to weight watchers, I think not. Total funds raised were £300.00.

Local (Essex) fundraising report by Geoffrey Child

I have in the past written about events, organised here in Benfleet, Essex, that have been very pleasant for all to arrange and beneficial for this worthy PSF UK charity.

This is another brief account of more recent events that have not only increased the general awareness of the PS condition, but also raised us some additional funds.


A Black Tie Ball was arranged in July 2007. The Hertfordshire venue was a lovely marquee, pitched in the grounds of a delightfully converted mill, on the edge of the river. Hotel accommodation was made available to many guests.

The weather was kind, and the champagne reception, held outdoors with bagpipe music, was lovely.

A great meal was then served, followed by an auction of items mainly donated by PSF friends.

The evening was completed with live music and dancing. A great evening was had by all, plus the fact money was paid to our charity. A great bonus!

Some pictures, taken that night, are now shown.

Paul and Donna Collins (parents to Ross) also attended the event:

“Hello Tracey,

We thought we would update you with our night out last night at the Summer Ball arranged by Nick Elmes & Jo Brewster, in aid of PSF UK. We had thought that this event would be shared 50/50 with another Charity, but we learned last night that Nick had moved it over to being totally in aid of PSF UK. A full black tie event, held in a beautiful marquee next to the River Stort, on the Essex side of the River (the other side being Hertfordshire). There was a Raffle; Auction (which included a Micro lite flight with the Proprietor of the Hotel) which they hope will raise a tidy sum. The party went onto 5am this morning, (we lasted until 2am) and the expectation is that over £1,000 will have been raised.

We are feeling a bit tired a the moment, but happy,

With lots of love,
Paul, Donna, Jamie, Ross & Scott”

• The Benfleet Methodist Wives Club continues to support “the children”.

Our godson, Ross Collins, lives in a nearby area and does attend some of their fund raising events. They also hear a great deal of news regarding Jordan. I believe that knowing people that benefit directly from fund raising is so meaningful and gives so much enthusiasm to these lovely ladies.

In November 2007 I visited the club again, and was proud to hand them a framed certificate confirming their fund raising, for a second year. It is quite amazing the different ways they manage to find to raise funds. They make items, including greeting cards, run white elephant stalls, hold coffee mornings and find many unusual ways of having sponsored challenges.

Thank you ladies. You are all so very kind.

• A Charity Christmas card! What about it I thought? Is this a first for us?

For good market coverage, both picture and greeting had to be carefully selected. Competition is great. Charity cards are very good and popular now.

I decided to paint our picture and have the original printed. A friend managed to persuade a client of his to print the card without charge. The friend supplied envelopes and packaging and I printed the sales flysheet. A good combined effort. Good friends are great to have! The cards were ready by September.
The end product was ten cards in a pack, all showing the PSF logo, registration details and confirming the charity would receive 100% of all money paid.

The result was we gave PSF £1,175. Not bad for a first, was it?

Two photographs of both the painting and finished card are shown for interest



On March 8th 2008 Birmingham took to its heart PSF UK and demonstrated its kindness and overwhelming generosity to Joel Hales-Waller and the Charity. Two special people, Julie Laight and Claire Hales professionally organised a “Night of Laughter” Charity Ball which was held at the ICC in the centre of Birmingham. Over two hundred people attended a lavish celebration of Joel and the other children in PSF. The Ball was compared by T.V’s Central Newsreader, Llewela Bailey and auctioneer Rory Daly. The Ball successfully raised for Joel and PSF UK a sum in excess of £23,000. The evening was opened by Geoffrey Child, PSF’s auditor, who detailed the history of PSF and how it has grown to help many people in supporting them with mobility and medical equipment and advice over the last 10 years. Then Lisa Hales, Joels’ mother, gave a heart felt and emotional insight as to how Joel and his family cope with his disabilities and what it means to them in having a child with these extreme difficulties. The reception she received from all present was one of admiration and was well deserved. Before the meal started, guests were invited, for a price, to take part in the Knife, Fork and Spoon game. This entailed all guests standing and holding up their Knife, Fork or Spoon in response to answering a three part multiple questions. If you answered wrongly, you sat down, and the winner of two hundred pounds was the last person standing, who answered all the questions correctly. During the sumptuous meal, funds were raised by an auction which included items such as signed pictures and memorabilia of the Red Arrows, Lewis Hamilton, David Beckham and Christiano Ronaldo. There were other wonderful gifts given up for auction, such as a tour of the House of Commons, expensive meals, team building day, a signed self portrait by John Hurt and two top class air flight tickets to New York. After the auction a spectacular raffle was held with prizes ranging from football tickets, signed copies of a Jeffrey Archer and Trinny & Susannah books and a Bill Bailey T shirt and CD. But the top prize was a wonderful 18ct yellow and white gold diamond necklet which was valued in excess of a £1,000. The night of laughter evening was overseen by a troupe of performers dressed as apes who ensured no one could take the evening too seriously. The apes were very clever and demonstrated drumming skills to match Phil Collins and singing prowess that matched Pavrotti! A magician also spent time with every table with how to do magic by Paul Daniels, which was very funny. The fund raising was finished by an auction for 10 beautiful large Teddy Bears, who were all given good homes. To complete the evening, an excellent live band started to play, which lead the guests into dancing up to the early hours of the following Sunday morning.

This report is brought by the PSF treasurer Paul Collins aka Groucho Marx, but that’s another story!

The evening included an auction of the following “lots”:

Lot 1: One hour’s cricket coaching with Michael Powell & Dougie Brown
Lot 2: Signed Red Arrows picture
Lot 3: Mud & Mayhem Driving Experience for Four Supported by Keyline
Lot 4: Tours of the House of Commons & Big Ben plus lunch & first class rail travel
Lot 5: Cristiano Ronaldo Signed Boot Presentation
Lot 6: Coutts Dining Room Experience for Six Supported by Coutts & Co.
Lot 7: Team Building Day for 10 Supported by More than Bricks and Mortar Ltd
Lot 8: Lewis Hamilton Signed Cap & Photo Presentation Supported by Deloittes
Lot 9: Dinner for two at Simpsons and Bentley Factory Tour
Supported by Bentley Birmingham
Lot 10: Signed Self Portrait of John Hurt Donated by John Hurt CBE

The PSF UK would like to thank:

Autoglass ■ Bigwood Chartered Surveyors ■ Ceasers ■ Claimar Care plc ■ Enigma Fire Systems Ltd ■ Ernst & Young and RBS ■ Harvey Ingram ■ Hammonds ■ Higgs and Sons ■ Life ■ Lodders ■ Mazars ■ Pinsent Masons ■ Pointon York SIPP Solutions ■ Rudell The Jewellers ■ Sk:n ■ Ward Lovett ■ Wragge & Co. Adventure Sports ■ Jeffrey Archer MBE ■ AMD ■ Bill Bailey ■ Llewela Bailey ■ Birmingham City Football Club ■ Birmingham Hippodrome ■ Bentley Birmingham ■ Brophy Riaz and Partners ■ Dougie Brown and Michael Powell ■ Coutts & Co. ■ Rory Daly ■ Deloittes ■ Ebitda Limited ■ Ethos ■ John Hurt CBE ■ JE Consulting ■ Keyline ■ MTBM ■ Marcus Galleries ■ Number nine the gallery ■ Andy Parker ■ Raddisson SAS Hotel Birmingham ■ Red Arrows ■ Rudell the Jewellers ■ Simpsons ■ Sion Simon MP ■ Sk:n ■ Trinny and Susannah ■ Virgin Rail ■ Waitrose

Andy and Maggie at AMD Print Ltd – for the charity pop ups that they have so generously donated.

Calling all companies!

If you would like to be involved in the Charity Ball 2009, either in advertising or in sponsorship, please contact Tracey Whitewood-Neal on or Julie Laight on

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