Archives 'Fundraising News'
Covid-19 update for GPA patients
Public Health England is advising those who are at increased risk of severe illness from coronavirus (COVID-19), which includes individuals with GPA, to be particularly stringent in following social distancing measures.
The normal clinical practice in the circumstance that a GPA patient catches Covid-19 is to stop their immunosuppressive medication while the patient is being treated for Covid-19 and to resume once clear of Covid-19.
British Society for Rheumatology has released some guidance for patients on immunosuppressive agents:
The advice on the Lupus UK website is also excellent:
London Marathon 2020
Do you have a friend or family member suffering from Wegener’s (GPA) or are that person suffering from the condition? Are you a keen runner or just fancy a challenge of a lifetime? Applications are now open for London Marathon 2020. You can run in support of the Wegener’s Trust via the Guy’s and St Thomas’ Charity. Every penny of the money you raise by taking part will help further efforts to better understand and treat the condition. You need to raise a minimum of £2,500. Visit the page here and make sure to let them know you want to run for us!
Medical Research Council is funding a three year trial of hydrochloroquine in ANCA vasculitis (mainly GPA)
“If our study is positive, we hope that hydroxychloroquine, an old fashioned and safe drug widely used in other rheumatic conditions, will make a real difference to patients with this complex and challenging disease.” explains Professor David D’Cruz.
He goes on to say “I cannot thank the St Thomas’ Wegener’s Trust enough for your unstinting and generous support over the years while we put this grant application together. Without your support, this trial would simply not have been possible.”
Hydroxychloroquine could be a safe and inexpensive game changer in controlling non-severe ANCA vasculitis, reducing the reliance on steroids and the need for toxic steroid sparing agents like cyclophosphamide or rituximab, as well as reducing associated complications such as infections, blood clots and stiffness of blood vessels. This HAVEN trial is to address the surprising lack of studies of hydroxychloroquine in ANCA vasculitis given its long history of successful use in other auto-immune conditions. Quinine was first used for patients with Lupus by Reverend Payne at St Thomas’ in 1894, and hydroxychloroquine has also been a safe, successful treatment for rheumatoid arthritis for over 50 years.
This 3 year trial will involve 76 patients in 10 specialist study centres across the UK. The Wegener’s Trust has successfully laid the groundwork for the HAVEN trial to get the green light from the Medical Research Council, including a smaller pilot study of 12 ANCA vasculitis patients which had shown benefits of hydroxychloroquine. We thank all those who have donated to the Wegener’s Trust, this is a huge win!
We would like to thank Professor David D’Cruz, Dr Alina Casian, Dr Susan John and Sangmi Kim for keeping the faith despite the many hurdles along the way and bringing this potentially game-changing trial to fruition.
Benkert family raise £270,000 for Wegener’s research
When Alice Benkert died of Wegener’s granulomatosis in 2010, her family were determined to help other sufferers. Wegener’s is a rare but incapacitating disease which causes severe inflammation of the blood vessels and can result in major damage to the lungs, kidneys and other vital organs.
Her brothers Jules and Ollie Benkert wanted to do something in Alice’s memory, raise funds and increase awareness of the disease.
‘We were led to believe by some of the experts in the field that although Wegener’s remains very hard to diagnose, with funding available for key research, treatment may become available quite quickly,’ says Jules. ‘So being able to make a difference or even “find a cure” seems to be within reach.’
With that aim, the family have raised a truly astonishing £270,000 for research at St Thomas’ – an amount which has wildly exceeded their expectations.
To mark the first anniversary of Alice’s death, they organised a sponsored bike ride from Esher in Surrey, where Alice lived, to Mumbles in Wales, one of her favourite places. Approximately 25 of Alice’s family and friends took part in the 200-mile cycle, raising £130,000.
Five years on, the family organised a sponsored bike ride across the Pyrenees from Barcelona to Alice’s favourite holiday location, the Aigua Blava Hotel on the Costa Brava. 25 of them, many from the original team, undertook the 200km ride on 18th May 2016 with more than 3kms in vertical climbing (on bikes) in over just 2 days. They raised £140,000.
‘Athletic ability was very diverse but the consistent factor was that every participant knew Alice and the family and was ready to help,’ says Ollie. ‘The length of this challenge was sufficient to grab many friends of friends’ attention and so the fundraising effort beat many of our expectations.’
For others wishing to fundraise for Guy’s and St Thomas’, Ollie suggests aiming high, ‘especially with people who are close or even one step removed. The impact of these events if they have a personal touch can be meaningful.’
A marathon for Mick
On Sunday 19 April, Richard Brown ran the Greater Manchester Marathon in memory of his brother-in-law, Mick. Mick sadly passed away last year from Wegener’s Granulomatosis, an autoimmune disease that causes organ failure. He raised an astounding £5,000 for Guy’s and St Thomas’ Wegener’s Trust which is undertaking research into the causes of the disease.
After losing their beloved Mick, Richard’s whole family wanted to do something together to remember him.
‘Mick was such a fit and healthy 50-year-old, and then he was diagnosed with this awful illness. He was strong and determined to fight it, but in the end, the treatment he had wasn’t enough. He passed away on the 12th May 2014, with his close family and myself around him.
‘He left behind his wife and two daughters aged 22 and 17. We knew that nothing could bring Mick back, but if we could help by raising money to fund research into this illness, then perhaps in the future we can stop other families going through what we had to.’
Richard has always been a keen runner and has attempted the London Marathon before, but it had to be put on hold when he sustained various injuries.
This time, he struck the balance right and was able to complete the Greater Manchester Marathon without too much trouble – although he couldn’t walk up the stairs at work the day after!
The race went really well and Richard finished with a time of 3 hours 6 minutes – easily beating his target of 3 hours 10 minutes.
Richard says, ‘I had to change my whole eating habits and basically plan my life around runs, but seeing the amount of money we managed to raise and thinking about how proud Mick would be of me is got me through it.
‘A lot of my family came over with me for support and were cheering me on – just what I needed in those final few miles.’
First five years of fundraising
Fundraising events for the Wegener’s Trust by families of patients have ranged from
This herculean effort on the fundraising side has raised £240,000 (close to £50,000 a year) in the five years since Professor D’Cruz and James Hancocks set up the Wegener’s Trust, clearly demonstrating the need that the Wegener’s Trust is fulfilling. Affected families are able to respond in a constructive way by helping fund targeted research into the condition.
The various lines of research into the processes and cell biology behind Wegener’s have been highly successful to date (see what we have found out so far) and should lead to better treatment for patients (see current research). This research can only be funded thanks to everyone’s successful fundraising.
Thank you so much.
For help on your fundraising or to put a patient’s story on the website, please email us on [email protected]
Marathon 5-a-side Football World Record
Two squads of eight lads, playing 5-a-side football for 36 hours in order to get into the Guinness Book of Records. Sounds easy doesn’t it? That’s a day and a half. 72 episodes of Eastenders, 720 boiled eggs or 24 eleven a side matches back to back.
Over the 13th, 14th and 15th May 2011, Paul and his friends, backed by an amazing group of volunteers passed the 36 hour record, passed the 38 hour target and went straight on to 40 hours!
All of this was in memory of Billy Newton, Paul’s father, who he lost to Wegener’s Granulomatosis in 2010. They raised just a shade under £15,000 for the Wegener’s Trust, an amazing contribution!
Read the blog on http://soccerampmam.wordpress.com/
Antonia’s London Marathon
“Once, a long time ago, in a life I’ve practically forgotten, I thought it might be a nice thing to run a marathon one day… ” And now Antonia Hancocks, mother of four, the least athletic person on the planet, has somehow got to get herself to the point where she can run a marathon.
Then on 17th April 2011, “I did it! Although I failed to discover my inner runner, in spite of all the training, I completed the London Marathon yesterday. Thank you to everyone who has sponsored me, sent good wishes, who turned up and cheered – it was all crucial in getting me round.”
Read Antonia’s blog at http://wegenersmarathon2011.blogspot.com
Antonia has raised over £20,000 for the Wegener’s Trust.
On 21st April 2013, Arnaud Feyrignac, the Au Pair of James and Antonia, ran the London Marathon for the Wegener’s Trust in an impressive three hours 50 minutes.
Abseiling off Guy’s
Fundraising for the Wegener’s Trust has kicked off in earnest! On Sunday 13th June, David Britten’s family abseiled down the 469ft Guy’s Hospital Tower, raising an impressive £7000 for the Wegener’s Trust.
David’s wife, Tricia, led the intrepid team…
…which included David’s sons, Chris, Nick and Rob.
Oh, and by the way, the tower is the tallest hospital building in the world!
Tricia would like to thank everyone for their support: “I am overwhelmed by everyone’s support and generosity and am delighted to have been able to make this contribution to the Trust.”