How your Christmas shopping can raise funds for VHL UK/Ireland, at no extra cost to you.

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by VHL UK/Ireland

How much of your Christmas shopping do you do online? Do you prefer to hunt down and compare the best prices from online retailers and take advantage of online only discounts?

Online charity fundraising and donation platform EveryClick has combined online shopping with the opportunity to raise funds for free with 'Give as you Live'. This means, just by simply downloading a quick and easy toolbar, you will raise money every time you shop, for free.

Here are some recent transactions with how much they have raised, by members who have signed up to Give as you Live and selected VHL UK/Ireland as their chosen charity:

• £70 spent on Ocado - £3 donated by Ocado
• £45 spent of Missguided - £4.36 donated by Missguided
• Plusnet sign up - £25 donated by Plusnet 

Every transaction adds up. So far supporters of the charity have raised an incredible £2781.85 for VHL UK/Ireland.

To find out more, simply head to www.giveasyoulive.com/charity/vhl

For more examples of ways online retailers donate, please watch the below video:

Thank you for your support - may we wish you a Merry Christmas and a Happy and Healthy New Year
VHL UK/Ireland

A night of raising awareness and funds for VHL UK/Ireland!

VHL UK/Ireland Home

by VHL UK/Ireland

On Friday 26th September, over 230 guests gathered at the Holiday Inn West in Peterborough, Cambridgeshire for the VHL Disease and Cancer Research Masquerade Party!

The event proved a huge success with over £6000 raised on the night, to be split between both charities.

Graham Lovitt, Co-Chair of VHL UK/Ireland was overwhelmed by the support shown, saying "I would like to add my sincere thanks to Vixstar for making a fabulous evening to over 230 people. The sum of money raised for the charity completely exceeded my expectations as well as, perhaps more importantly, raising awareness of the rare VHL."

The event offered guests a three course meal with arrival drinks, with plenty to do on the night. This included a raffle with prizes for everyone, from Chanel fragrances to hair and beauty vouchers to premium whiskey (all prizes were generously donated by individuals and businesses). The silent auction saw top prizes such as £500 worth of Benefit makeup, signed football merchandise (from Liverpool to Chelsea, there was something for every supporter), celebrity chef dining, experience days and even holidays!


As an extra way of fundraising, there were handmade VHL disease wine glass charms and confectionery gifts. There was also a chance for guests to purchase VHL pin badges, t-shirts and vests, raising an extra £130 on the night.

Many businesses and individuals came forward to donate time to attend the event, such as a photographer and candy floss vendor, the decorations were also generously donated. Over 20 tables were also sponsored by businesses throughout the country.

Speeches were given on behalf of both charities, with Roxanne Bonin taking the opportunity to raise awareness of VHL disease, a condition that many guests may not have been fully aware of.

VHL UK/Ireland would like to thank Victoria Faulkes- Arnold and her team at Vixstar Events (a team of volunteers who raise money for charities through events) for the time and effort put into place for the event, and to all guests who supported the evening. Most of all we are grateful for being given the opportunity as one of the chosen charities, not only to raise much-needed funds, but also to raise awareness.

 

What is normal? A setting on a washing machine!

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by Kathryn Samuel

It’s 2000 and the first Monday of my Christmas holidays; I’m 11 and laughing with my brother, Michael, because the nurses are running around the hospital, looking for my missing sausages and chips! Michael is 13 and has just been diagnosed with VHL – Von Hippel-Lindau disease. From this moment on our normal is as strange to me as the very idea of a brain tumour!

We were 11 and 13, we were meant to be looking forward to Christmas – I was just looking forward to having my brother back to… Normal?

There isn’t much I remember, 13 years on, from that first Christmas. All the appointments and

hospital visits have blurred into one, the years merging together to become one big chapter of our lives. What I do recall comes in snippets of memory: A car journey with my Dad, his words – “He will have to have surgery, one wrong move, they slip an inch, and Michael is gone!” Demanding to visit Michael every morning, the words my Grandfather said to me once, late one evening that made me feel the safest person in the world: “Don’t think that no one loves you, because I always will.” Michael complaining because his ice-cream used to melt before he could eat it, a magician, and the nurses wheeling a bed into Michael’s room so that we could wake up together on Christmas morning. Feeling special because I got to open one Christmas present before Michael – it was a game-boy colour. Doing the Can-Can around the children’s ward with the nurses on New Years Eve and Michael munching Hula Hoops really loudly next to my ear when we were watching a film, because he knew it would annoy me, and I couldn’t hit him!! That security of being sandwiched between my Mum and Dad watching a film together – Knowing, from that moment in the car, my Dad would always tell me the truth, no matter how hard the truth might be, I knew he would always tell me as it was. Visiting Michael, now a few years older, on Boxing Day and finding him in a foul mood because he was hung-over from one shot of Jack Daniel’s the nurses allowed him to have and proudly watching him walk the length of the ward with a zimmer frame. Saying the worst insults I could possibly think of to shock the nurses and make him laugh, my favourite: “It’s not fair you got all the height genes and you aren’t even using them anymore!” The moment you are told this is it – there will be no happy ending to his story as you had always secretly hoped and the hug from your Mum that you never want to leave. Standing in front of more people than you can remember, reading the words you’d written in memory and honour of your brother. Normal – Isn’t it?

VHL never stopped Michael and because of that it never stopped us as a family, we survived, we lived and enjoyed our time together as much as possible. He went to school, he passed his GCSEs and A’ Level’s, he got a job, he went to University to study Architecture, and even when he was forced to come home, he still never let VHL stand in his way of enjoying life. Our local pub had no disable access, so he would get the gents of the family to drag his wheelchair up the steps, park himself in the centre of the group and talk – non stop!! And, later, when he was more content with staying in his room, he studied and achieved a diploma in designing games; he would spend hours creating one game, or a character. He never stopped fighting to regain all that he had been forced to give up – He lost the use of his legs, he went to physiotherapy, even when they said he would never walk again, that only made him more determined to prove them wrong – he stood! And I will always remember the smile on his face when he was able to stand without support for a whole 2 minutes! He lived, he loved, and he laughed whilst putting two fingers up at VHL.

As abnormal as our lives have been we have never lost sight of what is truly important, and that is the message I want others to read. I have seen too many blogs describing in fine detail their problems; I want to show you, readers, that – Yes it is hard and painful, people will get hurt and yes, sometimes, you will get left behind. You watch someone you love suffering unbearable pain for over half your life, you support them, love them and hold their hand at the very end. Yet through all of this I would like to tell you, as someone once told me, it is going to be ok. I never say fine, fine in my family stands for: frantic, insecure, neurotic and emotional! No one is ever fine in my house we are all ok… or ko depending on how much wine is involved! Enjoy your life despite the pain, never forget to live, love and laugh as much as possible because one day that is all you will have left – the memories of those rare moments of freedom.

Michael never gave up, he sought to live life as much as he could each day – at the end his greatest delight was driving me mad by mouthing ‘laptop’ and pointing at it with a puppy dog look in his eyes because he wanted me to play his Final Fantasy 8 game for him!! His one wish was always to feel the wind in his face again as he ran along the beach – he is running free now between the moon and the stars. He won his battle with VHL because he never ever let it control his life, he fought back and he took control of every aspect of his life and when he chose to leave us for his next great adventure! He won. He is free and he is missed. For Michael, I will never give up and I will run and feel the wind in my face. We will all keep on running towards our new normal – what is normal? A setting on a washing machine!

Kathryn is running the Anglesey half marathon in memory of Michael - visit her EveryClick page to find out more - VHL UK/Ireland

8 handy tips for raising money for VHL disease

VHL UK/Ireland Home

by VHL UK/Ireland

1. Choose a fundraising activity that you have a passion for or set an achievement for yourself 

Go for a personal achievement such as a half marathon or sponsored cycle ride, or raise money whilst doing something you love such as Zumba or a bake sale. Take inspiration at other events that are currently planned. 

2. Create an EveryClick sponsor page, as well as a facebook page

Simply follow the simple steps to set up your EveryClick account and create your own Fundraising Page. This way you can share your event and invite others to share and 'like' on social media. You could also create a blog to keep people updated of your progress leading up to a fundraising event - great for a marathon training plan!

3. Hand out the VHL fact sheet

Great for educating and raising awareness - many people like to know about what they are sponsoring/donating to. Download here and print.


4. Let VHL UK/Ireland help by listing your event/activity

The charity are happy to share updates, photos and achievements on the official Facebook and Twitter pages, as well as the events page of the VHL UK/Ireland website - email uk@vhl.org.

5. Use an online sponsorship page and a paper donation form

Not everyone prefers to go online to donate or sponsor someone, it may also be more convenient to have a paper form to pin to a noticeboard or use around the office. Download a paper sponsorship form to print off.

6. Make sure you tick 'Gift Aid' 

This means the government will donate a set amount per every pound raised, if the person donating is a UK taxpayer. Tick the box on the paper sponsorship form or on your EveryClick page.

7. Use a VHL UK/Ireland t-shirt to raise awareness and promote your cause

Now available to buy in the online shop, cotton and sports t-shirts and vests and pin badges. Also, add VHL UK/Ireland artwork to your posters and online pages - email uk@vhl.org and we will send any artwork or information that you require.

8. Download 'Give as you Live' to donate money (for free) every time you shop online

Every penny raised is important in making a difference to those affected by VHL disease. Whether it’s a bake sale or a marathon, we would love to hear about what you are planning and offer any fundraising material available. 

What is the £5,000 target?

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Post by VHL UK/Ireland

We are in the new financial year 2014/2015 and it would be great if we could achieve £5,000 in our fundraising activities so that we can get a charity number.

Being a recognised Registered Charity enhances our status within the community and helps generally in all fundraising activities. The reason we don't yet have a charity number is simply because the charity doesn't yet have an annual income of more than £5,000. The UK Charity Commission is not interested until we have that level of income and then we would have a legal requirement to register. However, we are a properly setup charity with HMRC with a Gift Aid Number and that is all we can do for the moment. This does enable us to use EveryClick for online fundraising pages and donations now.

The re-launch of the VHL UK/Ireland website, along with the official Facebook page, Facebook support group, Twitter, Pinterest and Google+, will bring the charity closer to raising the required £5000 to gain registered charity status, by May 2015. All funds raised will be donated directly to research centres in the UK and support for those affected.Any money that we raise will be sent to aid research into our genetic diseases of VHL, HLRCC, BHD and FD. The 2 prime candidates for receiving are Professor Eamonn Maher at Cambridge and Professor Ian Tomlinson at Oxford and their researches benefit us all at a international level.

No matter how big or small your fundraising idea, every donation is vital. Spread the awareness and let others know how to fundraise or donate. 

Find out more about registered charity status.