When: April 3rd @ 12.30-4.30
Where: Tolka Room in the Centre for Learning & Development (CLD), Tallaght Hospital
Guest Speakers for the Day
President and Host at Powerful Patient/ Former Founder and Director of VHL Alliance
Counsellor with the Irish Kidney Association since 2006
Looking forward to seeing everybody on the day
– Connect with other patients and families
– Patients, family and friends welcome
– Tea/ Coffee and refreshments provided
RSVP to Sandra Collins @
Email: firstname.lastname@example.org Or Ph: 0858458443 by call or txt
ANNOUNCEMENT – Tickets are now on sale for this year’s Charity Masquerade Ball on Saturday 30th September 2017 at Holiday Inn Peterborough West!
Tickets are priced at £45 each or £40 each for a table of 10 and include a welcome drink, 3 course meal, entertainment, photographer and much more.
To order your tickets please visit:http://www.vixstar.net/
See what we did in Masquerade Ball 2014
Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there. Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world.
Organised by Eurordis
with PayPal connected to Ulster Bank Account
Or you can use the iDonate.ie button below However, please note that in order to cover bank fees, VAT and administration charges, iDonate.ie charge a fee of 4-5% on each donation.
VHL UK/Ireland Charity Christmas Cards now in stock – order yours today!
Support the charity with our bespoke Christmas Cards, only £3.50. Each pack of 10 feature two designs and 10 envelopes. 100% of profit will be donated to VHL UK/Ireland.
30 people + 1 dog attended our second arranged support meeting at Saint Mary’s Hospital, Manchester.
– Connect with other patients and families
– Patients, family and friends welcome
– Lunch and refreshments provided
Guest speakers included researchers, genetic counsellor
team, charity members and consultants:
10.00 – Registration – Tea & coffee
11.00 – Welcome from VHL UK/Ireland – Slides
11.30 – Dr Emma Woodward on Research
12.30 – Lunch
13.30 – Fiona Lalloo – Information on PGD
14.00 – Q&A with Kath Wallis/Fiona Lalloo
15.00 – Tea & coffee
16.00 – Session Closes
17.00 – Optional meal at The Rampart Lion
The charity submitted an application to the Ireland Charities Regulatory Authority (CRA) last year which has now been approved under Section 39 of the Charities Act 2009.
The £40,000 fundraising goal has been reached for this financial year. We have been in touch with Prof Eamonn Maher’s Cambridge research team and they have asked if we can continue fundraising towards an even more prominent piece of equipment. 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.
28 people attended our first arranged support meeting at Guy’s Hospital, London.
10.30 – Session opens – Registration – Tea & coffee provided
11.00 – Welcome
11.00 – Pre-implantation Genetic Diagnosis by Alison Lashwood, Clinical Lead PGD at Guy’s Hospital – Slides
11.45 – VHL & Research by Carl Spickett, part of Professor Eamonn Maher’s research team at Addenbrooke’s Hospital – Slides
12.30 – Lunch provided
1.30 – Update on VHL UK/Ireland from Graham Lovitt & Roxanne Bonin – Charity’s Co-Chairs – Slides
1.40 – Personal HLRCC experience and update on VHL Research from Dr. Tony Horton – Charity’s Scientific Adviser
2.00 – Q&A by Sally Watts, Lead Genetic Counsellor at Guy’s Hospital
3.00 – Session closes
A big thank you to the speakers, to Guy’s Hospital Staff and to Roxanne Bonin and all her family for the arrangements, and all the attendees for making a very enjoyable and informative day.
The VHL UK/Ireland Committee of Trustees on Aug 24th, 2015 set a new fund-raising target of £30,000 for the financial year ending April 5th, 2016. It was thought the target sum was ambitious, but achievable.
Over £5,000 has been raised for VHL UK/Ireland this year, enabling the charity to apply for registered status. All funds are being donated to research into VHL disease and similar conditions BHD and HLRCC by Eammon Maher, Head of the Department of Medical Genetics, Cambridge.
The charity would like to thank all fundraisers this year for all of their hardwork, those currently training for an upcoming event and those who have sponsored, donated, purchased pin badges and t-shirts. Every penny means a tremendous amount to VHL patients and those affected.
Join the ‘celebration’ on the VHL UK/Ireland Facebook page.
A Glitz & Glamour Ball raised £2,750 for the charity on Saturday 25th July 2015. The event saw over 240 guests attend to support both VHL UK/Ireland and Alzheimer’s Society, with over £5,500 raised for both charities.
The event took place at Holiday Inn West Peterborough, Cambridgeshire and included a three course meal with drinks, a charity raffle, silent auction, photographer, and more.
Local businesses sponsored tables and donated prizes to the raffle and silent auction.
Many VHL UK/Ireland pin badges, car stickers and t-shirts/vests/hoodies were also sold on the night, raising an additional, fabulous £700.
Graham Lovitt, Co-Chair of VHL UK/Ireland “I can only repeat similar words of last year. I would like again to add my sincere thanks to Vicky and her team at Vixstar and also our Roxanne for making a fabulous evening to over 240 people and raising another great sum of money for the charity, and perhaps more importantly, raising awareness of the rare VHL disease.”
Photo credit: Tony Cronin
Our £4,995 donation was spent by Eammon Maher, Head of the Department of Medical Genetics, Cambridge for a L20001 Luna FL Automated Fluorescence Cell Counter.
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.”
The donation will be used for a project to fund resources for the charity such as charity boxes, literature and meeting venues etc.
Our £5,000 donation was spent by Eammon Maher, Head of the Department of Medical Genetics, Cambridge towards a Biorad Zoe fluorescent imager.
This was the thank you the charity received:
“My name is Carl Spickett and I’m a post-doctoral researcher working with Eamonn. Thank you very much for the kind donation that has enabled us to make the purchase of a brand new Biorad Zoe fluorescent imager which arrived in time for Christmas. We’re one of the first groups in the UK to have this particular model and it is already being used daily! The use of this microscope will help us use cells as a way to model disease, to help understand disease progression and ultimately develop new treatments. It really is an essential piece of equipment to us which had previously been lacking and dramatically improves the work we do with cells. I’ve attached some pictures for you. It perhaps doesn’t look like a conventional microscope but it is designed so that we don’t need a dedicated ‘dark room’ to use it. Much easier as it frees up space in the department and brings the microscope closer to the cells to avoid all sorts of potential problems. Furthermore, the screen on the microscope allows us to train other researchers and allows all of us to look at the cells simultaneously during assessment. On behalf of myself, Graeme Clarke, Hilda Mujcic and France Docquier (the principal users of the microscope) we wanted to say a big thank you for all of your fundraising.”
Each listed Genetic Centre that manages VHL, HLRCC and BHD patients will receive information packs, containing information cards to pass on to patients.
Both newly diagnosed and existing patients and families will now be aware that there is support available. Each Genetic Centre should have the information pack from June 2015 onwards.
Find your nearest Genetic Centre.
VHL UK/Ireland would like to thank everyone who took part in raising awareness during VHL Awareness Month – May 2015. The event saw VHL patients, families and supporters throughout the UK, Ireland and beyond get involved in various ways.
The month was not short of fantastic fundraisers including Amy Henson completed the MK Half Marathon, raising over £500 and Claire Hobson and her team of 27 climbed Ben Nevis, raising over a fantastic £10,000.
The charity’s Facebook description of VHL disease was shared over 500 times and reached over 18,000 people, with the Willem Defo video viewed over 6,000 times. The month also saw a significant rise if merchandise sales, as supporters took to raising awareness with clothing and pin badges.
To find out how you can carry on raising awareness, please visit the VHL Awareness Month page or our Fundraise page.
From the Charity Commission: “Registered Charity Number 1160381 VHL UK/IRELAND We are pleased to tell you that we are satisfied VHL UK/IRELAND is established for charitable purposes for the public benefit. It has therefore been entered onto the Register of Charities with the Registered Charity Number 1160381. The decision to register VHL UK/IRELAND was based on the information you and the trustees of this charity supplied during the application process.
A Masquerade Party raised over £3,000 for the charity on Friday 26th September 2014. The event saw over 230 guests attend to support both VHL UK/Ireland and Cancer Research, with over £6000 raised for both charities.
The event took place at Holiday Inn West Peterborough, Cambridgeshire and included a three course meal with drinks, a charityraffle, silent auction, photographer, chocolate fountain and candy floss vendors and more.
VHL pin badges and t-shirts/vests were also sold on the night, raising an additional £150. VHL disease wine glass charms were also on sale to contribute to raising funds and awareness.
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.”
After the success of the 2014 Masquerade Party, event organisers Vixtstar hope to announce an event for 2015 shortly – find out more at http://www.vixstar.net/