Rare Disease Day February 29, 2016

Make your mark on 2016 - volunteer for VHL UK/Ireland

In 2014, a VHL patient was recovering from surgery and decided to spend their time working with the VHL UK/Ireland Chairman to relaunch the charity - together they started a new website, stocked VHL UK/Ireland clothing and pin badges, provided support for Genetic Centres, patients and info for fundraisers. In 2015, the first support group took place at Guy's Hospital, London.

As the charity has grown, the need for volunteers has increased and as we enter 2016, the charity would like to offer the opportunity to make your mark, no matter how big or small amount of time you are able to pledge.

The following roles are available.

1 - Regional support group organisers: London, Manchester, Wales, Scotland, Ireland; organising support group for patients at a venue (usually hospital where local genetic clinic is based)

2 - Fundraising assistants: includes sending charity buckets and pots to fundraisers, sending certificates to fundraisers.

3 - Charity merchandise: includes help with eBay page, posting out orders

4 - Marketing assistants: includes help with social media posts, blog posts, testing new website.

5 - Project help: first project lined up is sending hand books to every genetic centre and patients.

6 - 'Share Your Story' - fancy raising awareness by sharing your story? Have you fundraised recently or plan to? A simple blog post doesn't take long but is hugely effective.

We will provide you with all the information you need to get started and are here to guide you through all roles and projects.

If there is any other way you can think of helping or if you have any skills that you think can come in handy, please let us know.

Please email: uk@vhl.org

Thank you - we look forward to another brilliant year of supporting patients, funding research and raising awareness.

VHL UK/Ireland 

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: //www.manchestereveningnews.co.uk/news/greater-manchester-news/miracle-34th-stree

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.

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 www.raisewithsainsburys.com/charity/vhl, 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.

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!
http://www.waitrose.com/content/waitrose/en/home/inspiration/community_matters.html

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

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

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. 

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