Sunday, 22 November 2015

For the full story please visit this Manchester News Link: Miracle on 34th Street winner: Girl whose mum is recovering from brain tumour wins part in show: //

We hope Jessica's Mum makes a good recovery from her brain surgery and is well enough enough to get to the theatre to see Jessica perform.

Thursday, 15 October 2015

Sainsbury’s Everyday Shopping Card 4% Free Donation

Sainsbury’s Everyday Shopping Card
Great news! You can now raise 4% for us - for free - when you shop instore at Sainsbury’s!
Simply request your Everyday Shopping Card visit, top up your card and shop at any Sainsbury’s – it couldn’t be easier.

Now they have introduced automatic top-up from your debit card with either a regular weekly/monthly payment or when the balance on the Everyday Shopping Card has fallen to a certain level.

You can have up to 4 cards per family managed separately from one account.

Monday, 5 October 2015

Waitrose in Leigh-on-Sea chooses VHL UK/Ireland as a November Charity

We are pleased to announce that Waitrose in Leigh-on-Sea, Essex, will be featuring VHL UK/Ireland as one of their three chosen charities for the Community Matters 'green token' scheme, throughout the month of November!

This will also raise awareness of VHL, HLRCC and BHD and the charity

Monday, 21 September 2015

Donation Thermometer

The Thermometer on our website is currently broken as the site that hosts for free it is no longer supporting it. We will try and fix it soon.

Fundraising Goal

Tuesday, 28 July 2015

Glitz & Glamour Ball 2015: Another successful evening of raising funds & awareness

On Saturday 25th July 2015, The Glitz and Glamour Ball celebrated raising awareness and funds for VHL disease and Alzheimer's Society.

VHL UK/Ireland were honoured to be announced as one of two chosen charities for the second year running at the annual event organised by Vicky Foulkes Arnold of Vixstar Events. 

Over 240 people attended the evening held at Holiday Inn Peterborough West, enjoying a three course meal and plenty of 'glitz and glamour'.

Attendees enjoyed a live pianist during dinner, followed by a DJ until the early hours, with a professional photographer - complete with prop box - available to capture the fun of the evening.

Roxanne Bonin and Vicky Foulkes Arnold
Once again, the silent auction saw successful bids for luxury holidays and experiences, premium beauty and fragrances, signed sports merchandise and more. The raffle was drawn by local boxer Marcello Renda and included over 40 prizes handed out, with a grand finale prize of a nights stay with afternoon tea at a local luxury hotel.

The ball was lucky enough to feature local and national business generously sponsored tables and donated prizes to the raffle and silent auction. These kind donations contributed to the grand total of £5,000 raised during the evening, which was split between VHL UK/Ireland and Alzheimer's Society.

Vicky made an emotional speech in memory of her Grandmother, describing why she had selected Alzheimer's Society as a charity close to her heart, followed by Roxanne Bonin who described VHL disease and what the charity meant to patients and research in wider cancer conditions.

Three families with VHL disease were in attendance and met for the first time, something that the charity hopes to encourage more patients to unite at future events.

Graham Lovitt, Chair of VHL UK/Ireland said 'Thanks to Vicky and Roxanne for organising such a magnificent event. VHL UK/Ireland was honoured to share for a second time a platform - this time with the Alzheimer's Society. All the money received will go to into research to find a cure for VHL , a gene which is also at the centre of many common cancers. Congratulations'.

VHL UK/Ireland would like to thank Vicky, all attendees, donors, sponsors and volunteers for another fantastic evening raising awareness and valuable funds for research and support. 


Monday, 6 April 2015

Why I'm running the London Marathon 2015

by Ian Lowe

I guess I’ll start by telling you a bit about myself and my connection to VHL. My name is Ian, I’m a 25 year old accountant from Manchester and I’m currently training for the London Marathon in memory of one of my closest friends, Scott, who lost his battle against VHL in 2012 at the age of 23.

It’s difficult to write everything I want to say about Scott and the impact his ordeal has had on my life without it turning into a novel, but I will give it a try.

First of all, I want to make it clear that Scott’s case was unique and one of the most severe examples of VHL that I’m aware of, so please don’t think this is how VHL would normally affect someone -  because it most definitely doesn’t.

Like most people with VHL, Scott was completely unaware of his condition - or VHL, for that matter - for the majority of his short life. He was 17 before his condition was discovered by what, at the time, seemed to be a complete accident. He was at home alone, when he lost balance and hit his head on a radiator. After regaining consciousness, he ran to the local hospital, where scans revealed the tumours growing in his brain and down his spine. It later turned out that the loss of balance was due to his condition.

This was the beginning of Scott’s futile battle - and it instantly changed his life. He was forced to drop out of his Uniformed Services course at College and, despite being eligible for disability benefit, he chose to take a job at his local ASDA store.

Rather than take you through all of the treatment, operations and endless weeks spent in hospital, I'd rather discuss the impact he’s had on myself and those closest to him. As you can tell, Scott didn’t take his condition lying down, fighting to keep every ability, freedom and so many things that we all take for granted. Never accepting the easiest option.

Scott with his mother Margaret
Towards the end, Scott was unfortunately blind and unable to stand up. Instead of him complaining, we walked to the pub, with him in his wheelchair. It may not seem like much, but it was a big effort for him to get there and - sometimes quite a painful journey, too. That was his approach, though: he soldiered on through whatever was required to retain as much freedom and independency as possible.

Personally, I’ve witnessed some of the most heart-warming acts of kindness and seen a family grow stronger to deal with this most devastating case of VHL. Scott had many ups and downs, but we spent most of the time laughing through it. He took advantage of the services offered by numerous charities, which made things easier during times of need, and which also gave him things to look forward to, such as a trip to attend the filming of Celebrity Juice.

In all honesty, my entire outlook on life changed, thanks to Scott’s approach to his condition, his family and those closest to him - and also to myself at that time. If I ever encounter a problem in life - something usually deemed important by many, such as not being able to afford a holiday this year or that my laptop won’t work - I simply remember Scott, and any aspect of what he went through to, realise just how insignificant my problems are in comparison.

As I mentioned at the beginning, I am currently training for the London Marathon, which takes place on the 26th April 2015. While I’ve always played sport, I’ve never been a keen runner and the furthest distance I’ve ever knowingly run is 10km. Needless to say, training has been tough and my feet are paying for it as we come to the longest training distances.

Although I've had amazing support from everyone, especially my family, I have been close to giving up many times while on the longer runs. Again, when I get to that point, I simply remember Scott and the real pain that he suffered. And then I just get on with it...

 Sponsor IanI’m now looking forward to representing Scott in London, and I’ve got his name written boldly across my running vest for good measure. I’m not ashamed to admit that, while running alone, I’ve imagined crossing the finishing line in London and been quite emotional. I hope to keep it together when I hopefully do it for real, but I’m well aware that I wouldn’t be the person I am today without him, so have no problem with showing the world just how much of an effect he’s had on my life.

I’m not sure what you will take away from reading this, I imagine it really all depends on your own circumstances. If I had the choice, and it may be a cliché, but I’d like to think it would encourage you to never take anything or anyone for granted - as we never know what could happen tomorrow.

Also, the way you approach every situation, especially the bad ones, leaves a lasting impact on those involved, even if you don’t know them. Although it’s common for funerals to be packed to the rafters when someone passes away far too young, Scott still has a lasting impact on people three years on. If you were to look at his Facebook profile, it still receives regular messages from a vast array of people. His photo was hung up at ASDA by his colleagues and remains there to this day, with the caption “One in a million”. The same can be said of the website set up to raise awareness and spread his story, which has consistently received views since day one.

If I can have even half of the impact that Scott’s had on so many, then I’ll be a proud man.

Ian is running the London Marathon on 26th April 2015 for Help the Hospices, click here to sponsor him.

To visit Ian's website and to find out more about Scott's story click here.