Sunday, 7 February 2016

3 hit TV shows that feature VHL (von Hippel Lindau disease)

VHL (von Hippel Lindau disease) is a rare genetic disorder, causing benign and malignent tumours and cysts on various parts/organs of the body through a patients life.

It's not uncommon to have to explain what VHL stands for and what it is - not many people are aware.

That's why it is refreshing to see VHL featuring on hit TV shows - it is crucial in helping to raise awareness and educate the public of this rare disease.

Here are 3 hit US TV shows that have featured VHL:

1. Grey's Anatomy - Season 7, Episode 10 - Season 8, Episode 10.
http://www.imdb.com/name/nm0004930/

2. House - Season 4, Episode 2
http://www.imdb.com/title/tt1104387/

3. Bones - Season 4, Episode 1
http://www.imdb.com/title/tt1248433/


Have you seen VHL featured in TV, film or other media? Make sure to let us know within the comments section below and we will add to our list

Thursday, 28 January 2016

Making sure you get a GiveasyouLive donation

Something to be aware of for GiveasyouLive people:
The way Give as you Live works is that we claim a commission from the retailer for directing shoppers to their website and then share this with your charity as a free donation. If you have gone via their own offer email they would be able to track this and we would be unable to claim the commission for the sale.
It means you must go to the on-line website directly and not via an email link or a price comparison website.
To get the GiveasyouLive widget add-on see http://www.vhl-uk-ireland.org/donate

Tuesday, 26 January 2016

Sainsbury’s Everyday Shopping Card - Scheme Terminating


- Sadly it has been announced that this scheme is terminating February 27, 2016 with no further top-ups allowed after that date, but cards can continue to be used for 2 years.
There is talk of similar store cards with Tesco, M & S and others so all is not lost.

Monday, 4 January 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 

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: //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.