Vicky, Frankie & Roxanne with singer Nicole Lawrence

The night started with an arrival drink & the chance for guests to view the silent auction prizes, along with purchasing raffle tickets & entering the ‘Win a Bottle’ tombola. We had some fantastic auction & raffle prizes that had been donated by both local & international businesses. Guests then took their seats at their table to enjoy a 3-course meal followed by tea/coffee.

Shortly after dinner had finished Nicole Lawrence, a previous X Factor contestant in 2009, took to the stage & got the party started. She had a brief interval in her performance for the raffle to be drawn but otherwise everyone was up & dancing the night away – ending in some very sore feet!

It was great to see some of our VHL family there, with 9 attendees being VHL patients themselves.

The event was a huge success & over £12,500 was raised to be split between the two charities. We feel so proud & are truly grateful for everyone’s support before & during the night. A special thanks goes to Victoria Foulkes-Arnold of Vixstars Events & Roxanne Bonin, Frankie Goddard & all the staff at Holiday Inn Peterborough-West who helped on the night.

Please contact us if you would like to be added to our mailing list for future patient events.

December 1st, 2022 – The initial pilot phase of the registry has been completed and now wider participation is invited from all over the UK.

Anyone wishing to participate can contact  Study Coordinator Katerina Stroud on phone: 01223 746716 or email: Katerina.stroud2@nhs.net or the Chief Investigator Professor Eamonn Maher eamonn.maher@nhs.net or add-tr.humgendis@nhs.net

March 1st, 2024 – A meeting of the “Inherited Renal Cancer Syndromes” Rare Disease Group of the RaDaR Registry was held recently and attended by RDG group members including Prof Eamonn Maher (RDG Lead), Mr Rupesh Bhatt, Dr Lucas Foggensteiner, Mr Graham Lovitt (VHL/UK Ireland), Prof Marc Tischkowitz and Dr Emma Woodward. The group heard that recruitment to the registry had started in Cambridge and has now progressed to other centres. To date, 311 participants have been recruited with a variety of conditions including von Hippel-Lindau disease, PTEN hamartoma syndrome, Birt-Hogg-Dube syndrome, HLRCC and others. Plans to complete recruitment at currently participating centres and to add new centres were discussed.

June 7th 2024 – Some of this Charity’s Grant Award funding went towards Huairen Zhang’s PhD studentship and the following article has now been published.

Characteristics, aetiology and implications for management of multiple primary renal tumours: a systematic review

https://ukkidney.org/rare-renal/about

If anyone is organising an event for the charity please email website@vhl-uk-ireland.org with all the detail so that it can be added.

If possible include a suitable image to make it more interesting.

We have also offered, as an alternative, to help fund a piece of related research. The Prof said “we really want to ensure that any funding we receive from you is used in the best possible way”. This shows our efforts are treated with great respect and hard earned fundraising and donations are used in only the best possible ways.

The VHL UK/Ireland Committee of Trustees on March 21st, 2016 have now set a new 2 year fund-raising target of £80,000 for the financial year ending April 5th, 2017.

This was the thank you the charity received from Carl Spickett, post-doctoral researcher working with Eamonn:

“First and foremost a big thank-you to everyone for all your fundraising efforts and generous donations for Eamonn’s research. We had some discussion on how to make best use of your donation and decided to use the funds to purchase an automated ‘Luna FL’ cell counter for our work. The donation also covered the consumables for use with the equipment for at least one year.

I’ve included some pictures and thought I’d write a bit to describe how it is being used. As you can see it has really brightened up the cell culture room where our equipment is predominantly plain! The screen is extremely helpful for both demonstration and as a tangible way for us to discuss the findings as we get them in real time.

Our laboratory grown cells are counted on a daily basis to make sure we use the same number of cells for each of our experiments. We’ve found the new counter to be very fast and extremely accurate for doing this compared to counting by hand! In addition we are able to simultaneously check the health of our cell lines and measure their size accurately which is important for some of our experiments.

More specifically we extensively use kidney tumour cell lines to study disease progression. Since the cell counter is accurate over a range of cell types and shapes it is proving extremely accurate for use with these particular cells.

I hope this illustrates how this counter is not only extremely helpful for the specific applications of our work but also for the day-to-day tasks we need to do which are just as vital for our research.

Thanks again for all of your help on behalf of all of us using the equipment.”