Fundrasing update ’09

Fund Raising update No Comments »

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.

Jordans speech receives standing ovation

Jordans Blog 9 Comments »

At our 2008 Family weekend, Jordan asked if he could say a few words. Jordan, on his own, wrote the speech below.  He received a standing ovation and quite few tears, especially from me (his proud mum).  I hope you too find this inspirational.


Jordan Whitewood-Neal: Speech on my feelings about Proteus Syndrome.

Ladies and gentlemen I believe you all know me but for those who don’t I’m Jordan Whitewood-Neal and I’m kind of new to this so you’ll have to bare with me. Now I’m not here to tell a story or to give advice but to give some sort of direction. So as you all know Proteus  is an overgrowth syndrome which causes bone, organs and tissue to grow out of control, for some Proteus sufferers it is a problem a wall on the road to the future but for me and hopefully many more it has become a way of life and everything is considered no different to the way anyone else lives. So through my long 13 years I have come across many hurdles as well as probably many other Proteus sufferers, and some have been big some small but I can tell you this, every one of those hurdles I have conquered. I’ve wheeled my manual wheelchair in a mini-marathon of 2.5 kilometres, I’ve walked when the doctors have said I couldn’t, I’ve ran when the doctors have said it’s impossible and I’ve played football when the doctor’s have said my legs just wouldn’t take it. I defied everything they said and I went further I played golf, basketball, I swam and what ever I wanted to do, I did it. So as I said I play golf and it’s keeping me energetic and fit and I find it fun now proteus to me has never ever got in the way of my education I’m top in most of my classes and hopefully will be taking three GCSE’s early which are an end of year eleven tests in English, art and possibly L.C.T. I’m also now in year nine and am going to become a peer mentor to a selected student which I believe will be good for both me an the student I mentor especially if they are being bullied because I have experienced it myself. Now some of you might know this already but when I finish school I want to go to college, then university to study to be an architect. Now I dream and when I reach that dream, I’ve won, I might not have won every battle but I will definitely be able to say that I won the war.

Now Proteus Syndrome does not only affect the sufferer but also the family some closer, some wider, sometimes it affects the mum, dad, brother or sister but then sometimes it can affect cousins, uncles, aunties and grandparents as well but whatever happens you must never ever let Proteus split up those close to you, never give in, always keep going and keep your mind strong which leads me into a little story. Two boy’s once came up to me and very politely said “excuse me do you mind telling us what you have” and that was the breakthrough, I told them what I have and they were really nice and they are the people that I have loads of respect for, it made me realise that having Proteus is not a curse it’s just the way we are and we should not be judged on the shape of our body but what’s up here in our heads and what we fill it with and that’s how I want people to think.

Now I’d like to unfortunately turn to the sometimes hard but capable difficulties that Proteus brings me and these problems probably occur in many others. At least once in our childhood or maybe even past that stage all of us who suffer Proteus will be stared at, bullied and sometimes just go through a stage where we feel angry at everything and spend our time just wondering why me why not anyone else and I would know I’ve been through the stage myself. But luckily they’ll be a stage where you feel absolutely fantastic, you’ll feel energetic, you’ll feel happy, and you won’t even care if you have proteus and that feeling would continue for how ever long you want and I’m currently going through that phase I want to really focus on school, I want to go out with friends down town and just hang around like any old teenager should, I want to play golf, listen to music and just have a good time no matter what I have. And the happiest thing I can say is that sometimes I completely forget that I have Proteus even though subconsciously I know I do but to tell the truth who really cares and that is the message I want to get across that nothing should hold us back,  nothing should stop us from doing what we want and that nothings ever easy but what the fun in something if it’s not a challenge.

So thank you for listening I hope that everything I said gave each and every one of you some help and that you really believed in what I said.


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