Free personalised T-shirt for VHL Star Fundraisers

VHL UK/Ireland are excited to announce free t-shirt and t-shirt personalisation for 'VHL Star Fundraisers' who will be raising over £1,000 (including € and $) in a fundraising event or activity!

From marathons to mountain climbs, we hope to get you some extra cheers from supporters with your name printed on your shirt.

If you would like to apply for your free personalised t-shirt, simply email to: uk@vhl-uk-ireland.org

VHL & New Ark Ball raises £6,000 in Peterborough

On Saturday 30th September 2017, the Vixstars Charity Masquerade Ball raised £6,000 for VHL UK/Ireland and local Peterborough charity, New Ark.

The evening saw over 220 people celebrate the evening in style at Peterborough Holiday Inn West, arriving in masquerade and partying until the late hours.

The night included a charity raffle with prizes such as champagne, wines and whiskeys, local restaurant and beauty vouchers, food and chocolate hampers, premium cosmetics and finale prizes of Champagne Afternoon Tea and Nespresso Latissimo Touch Screen Coffee machine worth £279.

The silent auction was also a success, with holidays, experiences, signed sports memorabilia, Chanel gift sets, an iPad and much more won on the night by the highest bidders. Vixstars would like to say a huge thank you for the kind donations to the Charity Raffle and Silent Auction.

Nicky of New Ark and Roxanne of VHL UK/Ireland delivered their speeches, which was followed by a 3 course meal, live DJ and party goers had the opportunity to take home photographs in the designated professional photo booth. The night was captured by sponsor Thomas Byron Photography, who kindly supported the event and has uploaded the album to Facebook.

The night was particularly special as 16 von Hippel Lindau patients were in attendance to celebrate the evening, which proved as a fantastic opportunity for many of the patients to meet each other fir the first time and reconnect from previous events. From the charities perspective, we are proud that this was able to happen and also that for another year running, over 220 people left the evening understanding what VHL disease was - of we we cannot emphasise the importance of raising this much awareness.

We are extremely proud to say that £6,000 was raised on the night, which will be split between both VHL UK/Ireland and New Ark. We would like to thank Victoria Foulkes Arnold of Vixstars Events for her support that started in 2014, and has seen the VHL charity involved in three events, of which have gone from strength to strength.

Thank you to everyone who attended and the businesses and individuals that kindly sponsored the event - your support means so much to the VHL UK/Ireland Charity and patients and families.

 

Vixstars Charity Ball 2017 Official Sponsors:

• Remember The Magic
• Murano Silver
• CMW Design
• Viron Media
• JM Building Development
• Thomas Byron Photography
• Summer & Indie
• Vixstars Occasion Hire
• T-Print Apparel
• Starworld
• Fruit of The Loom
• Ralawise
• KJS Print and Direct Mail
• Viron Media
• S&M Contractors
• BGL
• Benefit Cosmetics
• Chanel

Manchester Support Meeting 22nd October

Please come to our latest support meeting arranged on Saturday 22nd October 2016 at St Mary's Hospital, Manchester.
 APPLY now so that we can plan catering.
10.00 - Registration – Tea & coffee
11.00 – Welcome from VHL UK/Ireland
11.30 - Dr Emma Woodward on Research (topic TBC)
12.30 – Lunch
14.00 - Q&A with Kath/Fiona
15.00 – Tea & coffee

- Connect with other patients and families
- Patients, family and friends welcome
- Lunch and refreshments provided

We are also planning on having a dinner afterwards, as an informal get together, after feedback from last years event.

Linzie Offord nominated her children xx spreading awareness for VHL. #vhlwarriorfamily

"The bad times that I've gone through have only made me appreciate life more" by Barry Moloney, VHL patient

For me, being told I had VHL was a very insignificant thing. I remember brushing it off that morning my mam told me. She had been worried about telling me for weeks. She had sleepless nights just thinking about breaking the news to me. To be quite honest, from what I remember I didn't care at all. I didn't care because I was only 11. I had bigger things to be worried about than VHL. Bigger things like my maths homework, and trying to do last minute piano practice before my lesson the next day. By the time I was 16 I realised how bad things were going to get. For years I didn't even think about the fact that I had a serious illness. Being told I had cancer hit me hard. I was 18. People think that being 18 makes you an adult but I was not an adult that day. I was a scared little boy.
I was sitting in Dr O'Donnell's office with my Uncle Brian. She told me the cancer was very small, that it was very early stages. She told me how good this was. In a way I was so relieved to hear that, but on the other hand, Cancer is Cancer. It doesn't matter if it's small because we all know that no matter how small it is it's going to grow and it's going to spread. On some level I knew this was coming, before the annual scans I tried my best to prepare myself for the worst. On another level I was completely shocked. No matter how hard you try to prepare for something like this, you never expect the worst to actually happen. To be completely honest, a part of me just wanted to get on a plane and leave. Just get away from it all. I've had this feeling many times since then. The day I was told the cancer had to come out. The week before the surgery. The day before the surgery. The morning of the surgery. All I wanted was to get away. Leave it all behind. Not be in pain. I of course, came to my senses and realised that this is my life now. If my Mam can go through 3 major surgeries and fight every single day of her life, I sure as hell can do it too.

I can tell you now, Cancer is not fun or romantic. Movies tend to romanticise it quite a bit when in actuality it's the most heartbreaking experience anyone could ever go through. I'm going to use the clichéd statement of "you never think it's going to happen to you". You really don't. You go along with your life thinking everything is going to work out until that day. It's hard to describe. It's almost as if  you faze out for a few moments and "your life flashes before your eyes", another overused but completely true statement. I thought about my family and friends. I wondered how I was going to break the news to everyone. I thought back on when I was a kid, when the hardest thing in my life was my homework.

That moment the anesthetist says "Bye Barry, see you later", you don't even have time to realise that these could be the very last words you will ever hear. I made it out like this surgery was no big deal and that I was completely fine having it to all the people I love, knowing full well to myself that this surgery could very well be the end of me. Weeks before the surgery I wrote a letter. I really would suggest everyone should write down the things they need to say to the people they love. Looking back now though it probably wasn't very good for me to be thinking about death at that stage, but that's the thing with cancer. You never know what could happen. With me, the cancer was close to the major blood vessels in the kidney. No one can say that you're going to be ok and be completely sure. It's impossible. I'm not a child anymore. I've seen enough in my life to know things don't always go to plan. Whether it's a post operative infection or a post operative bleed. There's no way of knowing what's going to happen in the future. No matter how much you pray, what's going to happen is going to happen.

I spent hours every day for a week after my surgery praying to God to stop the pain. I cried. I'm not ashamed to say it. I'm a teenage boy and I cried in front of my Aunt and Uncle, in front of nurses, and even in front of one of the most beautiful doctors I have ever seen in my life. Men need to know there's nothing wrong with crying. People don't think any less of you for doing it. So many men I know hold back tears no matter how much pain they're in. I spent hours praying, but there was nothing. I even pleaded to God to "take me away". Being in so much pain that you are literally praying for death is not a place I ever want to be in again. I have so much in my life. I have so many people in my life that I love, who love me. However, at one point that all went out the window. There's something about pain. It's a strange thing. It can make you want to throw your whole life away just for relief. At that moment I was in so much pain and I just wanted it all to end. It was a pain I've never experienced, a pain I never even imagined existed. It was what I imagine a gunshot wound or a stab wound feels like. If it is they really don't convey it very well in the movies. I screamed and shouted, all I remember is seeing nurses and doctors running towards me. Everything was hazy. I couldn't hear anything, all I could focus on was the pain. They got me into the bed and looked after me expertly. I cried. I stared into the doctor's eyes.  She held my hand. There's something about another person holding your hand that really helps you. A comforting act like that from a doctor nowadays is very rare. I realised at that moment when all these people were around me helping me that I wanted to live. I wanted to see my Mam's face again. I wanted to see my friends, the rest of my family. I wanted to put on my uniform and sit in the Marys' office with the Red Cross. I wanted to sit in a boring plant lecture where all we do is talk shit about how "we're never going to need to know this stuff". I wanted to sit with my housemates eating toasties, drinking tea and talking shit about our friends. I honestly just wanted to be at home.

That was the worst pain I had ever felt. That's what I thought, until December 4th 2015. That

was the day my incredible Mam, the woman who raised me and my two big brothers by herself while fighting this awful disease, passed away. She fought everyday for 11 years. She went through three major and extremely life-changing surgeries over the 11 years. She spent the last 4 years of her life on dialysis for 4 hours a day, 3 days a week.  She was the strongest woman I have ever known. She lost her husband to cancer and still managed to successfully raise three lads all by herself. VHL changed her life completely. That day in the hospital was like a paper cut compared to this pain. I lost a part of me the day she died.

Months before her passing Marie vowed that she would climb the Queen Maeve Trail up Knocknarea Mountain, Strandhill.  That dream of hers never came true as she became too sick. However, her family and friends will honour her memory by taking part in Strandhill’s 32nd Annual Warrior’s Run up Knocknarea Mountain on the 27th of August. All the money raised will be donated to the VHL Alliance to find a cure for this disease so other children don’t have to lose their parents so soon in their lives.

VHL has taken so much from me, my childhood, my Mam and even part of my body. My life has changed dramatically since that winter morning when I was 11 years old. The story doesn't end there. I know that eventually VHL could take my life, but it hasn't taken it yet. I still have a whole life to experience. The bad times that I've gone through have only made me appreciate life more. I'm going to fight as hard as my mother did to the very end.

VHL Awareness Month

With VHL Awareness Month now in full swing, here's a few ways you can get involved:

• Print our poster explaining VHL disease. 
• Use the VHL Awareness Twibbon profile phot. 
• Share your #vhlawarenessmonth photos and selfies. 
• Share our Facebook posts to spread the message. 
• Wear your VHL t-shirt and pin badge with pride. 
• Fundraise! From sponsored runs to office/school bake sales, there are plenty of ways 

Thank you for your continued support.

VHL UK/Ireland 

"I appreciate everything I have and my body being healthy between clear scans" by Fran Bechelet, VHL patient

My name is Francesca and I'm 25 years old. 10 years ago, I discovered I had VHL and my life changed. I feel after 10 years of experiencing this genetic disorder I'm ready to share my story and share awareness.

10 years ago

I was 15 years old when I was diagnosed. It took me 6 months of prove to the doctor I wasn't well I wasn't feeling well - constant headaches, sickness, dizzy spells; I was told I was endemic, I was anorexic, as I was experiencing dramatic weight loss everything you could possibly think of being diagnosed with. I was losing my confidence in myself as I couldn't understand or control my own body. 

Thankfully, one day my mum refused to take the doctors advice and I was rushed to A & E for all our piece of mind; they would give me a brain scan.

They sat me in a room and said I had a brain tumour. With not knowing much I was weirdly relieved they had found something- I had been ill for so long I had forgotten what it felt like to feel well. Sadly people with VHL will feel this way when there first diagnosed whatever the outcome.

It was removed successfully by the amazing surgery I received at Addenbrookes Hospital with a couple of months physical recovery. No one would ever understand the emotional recovery for not only myself but my families recovery too.

With successful surgery, I was told that I had a rare genetic disorder VHL. My family was screened and luckily I was the only one in my family with the genetic disorder which I was so grateful for. Naturally, I did feel, when I was first diagnosed, guilt on my family and also anger; why me?. I felt anxious too but I now know that is so normal with any illness but as the years got on it has also made me much stronger.

5 years ago

I had been clear for 5 years, completed school and sixth form and decided I wanted to take my career into the beauty industry

I felt healthy and happy until my regular VHL screening at Addenbrooke's came along- my results from my CT and ultra sound had arrived.

I sat down that day to be told I had to have a Whipple's Procedure, as they have found numerous cysts in my pancreas. VHL patients may know this is a major operation. During the operation, they would remove part of my pancreas, part of my stomach and Gallbladder. I will not lie to you- when I found out the news, I took it very badly; what was in store for me would change my digestive system and body forever. 

It was tough but you fight something inside of you that just fights to get yourself through it. 

Post-op, I had little energy and found that patience and rest helped me, along with gentle exercise, swimming, walking the dog with friends and family and a bland diet helped too. 

5 years later

I did have another brain operation and thankfully it was removed.

Like everyone I suffer from anxiety and stress daily mostly when I'm due my screening but I also feel so blessed I have these screenings for piece of mind. I wanted to share my story (which I hope is not too negative) to show that you are not alone.

My biggest blessing is having support from my family and partner and having the strength and gratitude for life in general to appreciate everything I have and my body being healthy between those clear scans.

To deal with my health anxieties (which are normal for a VHL patient), I have found working out, eating clean, spending time with loved ones and getting enough sleep helps and heals my body. 

I hope my story has helped people find comfort and spread awareness of VHL disease.

Francesca X

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

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

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.

Charity Poster

There is now a one page poster for the charity to download and print for putting on notice boards from vhl-uk-ireland.org/VHL-UK-Ireland-Information-Poster.pdf

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. 

...

Why I'm running the London Marathon 2015

VHL UK/Ireland Home

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...

I’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.

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

VHL UK/Ireland Home

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