In the early hours of 22 May 2015 Elin Rose lost her 4 year battle with Ewing’s sarcoma. When treatment options in the UK became limited Elin’s parents, Sian and Martin, begun raising money to fund Elin’s treatment, which was likely to take her to the United States. Family and friends rallied round and with the support of the Ewing’s Sarcoma Research Trust a significant amount of money was soon raised. The fundraising gave Elin and her family options, hope and access to treatments that might otherwise not be available. Elin travelled with her family to receive treatment in the United States, but sadly the treatments available were not enough to help her. Elin’s parents were determined to use money raised to address the fact that treatment options for children and young people in Elin’s position are so desperately limited. They also wanted to fund a suitable project in memory of their brave young daughter. Sian and Martin are now collaborating with Professor Janet Shipley, who is leading a team at the Institute of Cancer Research (ICR). Professor Shipley’s team are determined to find more effective and less toxic treatments to offer children and teenagers with rare sarcomas, such as Ewing’s sarcoma. Professor Shipley is one of the world’s leading experts on the biology of sarcomas. Her research aims to support the development of new drugs – or identify existing drugs – that will specifically block the effects of gene aberrations that drive specific types of sarcomas and improve outcomes for teenagers with cancer. This research aims are to improve the treatment of patients with sarcoma that have a poor prognosis. Sian and Martin join a number of parent-led charities who have tragically lost their child to sarcoma and who are now supporting research. New and better treatment strategies using more targeted therapies are required for Ewing’s sarcoma and the hope is that these will be derived from research into the underlying genetics and molecular biology of childhood cancers, so this is where Professor Shipley is focusing her efforts to improve our understanding of the genetics and molecular biology of particular tumours. Using cutting-edge technology to find the genes associated with the development of rare tumours, the research team will attempt to unpick the cascade of events which cause cancer cells to spiral out of control during the disease’s development. To fast-track the most relevant and new treatments for sarcomas, the potential role of re-purposing adult cancer drugs in children will form part of the research, which will also be used to inform clinical trials and speed-up the time it takes to get a drug to a patient in the clinic. There are 2 approaches the research team are interested in investigating:
- Preventing tumour cells from repairing damage to their DNA
- Forcing cancer cells to become a different type of cell
The great weather during August and (less so) September to date has seen ESRT and a number of our supporters keeping busy with plenty of activities. We've been amazed by the number of people who have raised money for us over this period, and those signing up for upcoming events! Three men tackle three peaks In August, Matt Short was joined by two school friends in tackling the Three Peaks Challenge. Starting in Wales, they successfully climbed Snowdon, Scafell Pike and Ben Nevis - the highest mountains in Wales, England and Scotland respectively - just outside of their target time of 24 hours (returning to the car at the foot of Ben Nevis 27 hours after starting out). In the process, thanks to a number of very generous donations, they raised just over £2000 for ESRT.ESRT Trustees reaffirm their commitment Also at the end of August, a number of the ESRT trustees had an "offsite" at HQ, to discuss their thoughts on how far the charity has come since we started out four years ago, and where we need to develop to take the charity and its use of donor fundraising to the next level. It was a wide-ranging and eye-opening conversation, giving us all an added incentive to move things forward as a group. We've been hugely indebted to the wide number of people who have reached out to us to get involved, as well as individuals who have given their time to fundraise, volunteer and act on our board of trustees. It's been a hell of a ride and we're looking forward to pushing on. And into September... International Childhood Cancer Awareness Month September is International Childhood Cancer Awareness Month. And we've not let this one pass up by! Nicola, who heads up our Facebook and Twitter presence, has been creating collages of a number of supporters who have asked to get involved. We asked our Facebook supporters to get in touch if they wanted an image of them, or in the case of a parent, their child, to be used as the faces of Ewing's Sarcoma. Our goal? Raising awareness of this rare cancer among the online community. It's been a huge success so far, with a number of people getting in touch, and a number of collages being posted on the Facebook page. But that's not all! The fundraising hasn't stopped. ESRT was hugely fortunate to be chosen as one of four charities supported by Morgan Stanley and Clifford Chance in their "London Charity Cup", a 5-a-side football tournament held in London and attended by a number of law firms, as well as investment bank Morgan Stanley. Matt - who works at a law firm that attended - played in goal, with the team unfortunately crashing out in the semi-finals to a strong Clifford Chance team. The most important thing, however, was raising awareness at the event, and the funds raised. Lots of very generous donations from supporting attendees made the day a huge success for a charity, and it was a very fun day! Then, no rest for the wicked - it was time for the annual Dragon Boat race! ESRT had two teams entering this year - Nigel and Lesley's permanent fixture team "These Bones Were Made for Rowing", and "Berry on the Water", a team entered by Berry Gardens, a local business that have supported us for the last couple of years. The weather was largely good (although that didn't stop some of us getting very wet!). As well as the teams entering the fray, ESRT ran a stall, featuring "hook a duck" and "Name the bear", both of which kept trustees Elaine and Louise busy - I'm sure they'll tell you it's more tiring than rowing!
We would like to thank these wonderful people who have fundraising events planned during the next few months. If you would like to visit their pages to find out more about them and donate, you can go to the Virgin Money Giving homepage and use the search function to find their fundraising page: Virgin Money Giving Homepage >>June 2015
- Alan Aitchison is entering the Tough Mudder in memory of his brother, Daniel.
- The ‘Scrambled Legs’ team of: Lauren Thorogood, Nigel Short, Chris Parsons and Graham Twist are doing the Back2TheTrenches obstacle course.
- Letitia Taylor is running a 10k run in memory of her amazing friend Cathy.
- The, ‘Shattered Knees’ team Kenneth and Mark Reilly, Anthony Dillon and Tim Dovey are aiming to do the Three Peaks Challenge.
- Nick Watts and Stuart Redding are doing the 100k Grand Union Canal Walk.
- Danielle Eades–Arter and Tom Roberts are taking part in a Sky-diving event.
- Claire Turner is entering the Three Peaks Challenge.
- We hope to have three boats in the Dragon Boat Festival at Bewl Water. Virgin Money Giving pages are yet to be set up by the teams.
- Alasdair Dewar is doing the Great Scottish Run in support of several charities including the ESRT.
This year's festival is being held on Saturday, 13th and Sunday, 14th September 2014 at Bewl Water near Lamberhurst in Kent and the Ewing's Sarcoma Research Trust will be participating for the fourth year running. In previous year's the charity has raised nearly £50,000 towards realising its aims and we hope that this year will be just as successful. If you would like to know more about the charity's participation email us now @ email@example.com
We’ve been fundraising for over two years, and so far we’re amazed by the progress we’ve made. We’re hugely indebted to our wonderful fundraisers across the UK and the world who have donated, or helped support us in any other way, and this page is a little update to thank the people who’ve gone out of their way to raise funds for us. Below is a summary of all of the people or organisations that have helped us reach where we are now! August 2011 HSBC’s Sports Association was the first fundraiser we received money from – a £750 donation from their Summer Ball. This was hugely important, in allowing us to set up for our first organised fundraiser – the Dragon Boat Festival 2011. September 2011 The Dragon Boat Festival! We have to say a huge thank you to all the volunteers, participants, and sponsors of our launch event, which helped us raise another £13,000 for research. To see how it went, click here.October-December 2011 Berry Gardens, from Five Oak Green, Kent, completed a Sponsored Jaffa Cake eating contest, raising more money for us during this period. January 2012 Newport Girls High School Academy Trust raised £427 for us through a number of activities in the run up to Christmas. Edenbridge School also made a very generous donation in January 2012. February 2012 University of Leicester Boat Club undertook a sponsored 24-hour row, where they rowed the equivalent of Leicester to Geneva, and raised in the region of £1500! It was a long night, and hard work, but was great fun and raised a great amount of money! To find out more, click here. Ben Wilson, Dan Devitt and Sean Beard also completed the Tunbridge Wells half marathon for ESRT! March 2012 Jarvis Investment made a very generous donation, from some fundraising in the office, including a dress down day. April 2012 Matt Parsons completed a sponsored 24-hour row for ESRT in February of this year, at Nizels Health Club, where he works. Daren Wilson completed one of the most challenging sponsored challenges for us (the most challenging is below!), completing the Brighton Marathon and London Marathon on consecutive weekends – finishing both with times around the 4 hour mark, raising £1400 in the process! Victoria Elmer completed, without doubt, the most extreme challenge! She completed an Ironman Triathlon, swimming 2.5km, cycling 112km and then running 26 miles! She finished in a great time and managed to raise £576! Mariselle Harrison, Lizzie Harrison and Laura Whiteley rounded off a trio of extreme challenges, by completing the YOMP Fell Run, raising another £430! Lucy Russell completed a sponsored cycle for ESRT in this month. Callum McDonald also raised money for us in April. May Pavneet Singh completed her first skydive, raising in the region of £500 for ESRT! Morag Love and Catriona Campbell raised around £600 for us too! Pauline and Jim Hughes became involved with ESRT in May 2012, and, through a combination of donations online and in the aftermath of their son Mark’s death, donated £5,000. To read Mark’s story, click here. June Steve Gill completed the Three Peaks Challenge in June, raising a fantastic £350! July North Ayrshire Amateur Swimming Club completed a sponsored swim in July, as the swimming club of Mark Hughes, and they raised an amazing £1700! August NHS County Durham made a kind donation in August 2012. September Dragon Boat Racing came back round again, and we managed to raise another £11,000 – click here to find out how we got on! Coutts Bank made a generous donation of £250. October Billy & Harvey Clifford (and Dad) completed a sponsored run for Ewing’s Sarcoma Research Trust, once again in memory of Mark Hughes. Billy and dad finished the 10 and a quarter mile run in 1 hour 40 minutes, whilst Mum and Harvey cycled round behind them – encouraging the two runners in wet and windy weather! They raised a fantastic £565! Alison Hughes also hosted a charity football match in memory of her brother Mark, raising a further £1400. November We were saddened to hear of the passing of Vernon Craig Norris earlier this month, having received an e-mail from his parents-in-law, Sue and Peter Chew. Vernon unfortunately passed away after a second fight with Ewing’s Sarcoma, and it was his wife Phillippa’s wish that donations were made in his memory. Described as a very clever, knowledgeable and brave person, Vernon will be sorely missed by those he leaves behind. Phillippa, Peter, Sue and Vernon’s parents Mel and Patsy have asked us to thank everyone who has contributed such kind donations. We are hugely grateful for the number of generous donations. Blemain Finance also raised £451 for ESRT this month, through a sponsored dress down day. December 2012 Yorkshire Building Society completed a sponsored Walk, Run and Cycle around Millport, raising £697 for ESRT. We also received a kind donation from St Palladius Primary School, North Ayrshire, of £150. Another donation was made in memory of Vernon Norris, of £175. University of Leicester Law Society raised £202 through a more unusual fundraising method, donating £1 of every ticket sold to a “Shot Showdown” to ESRT. January 2013 Ashurst LLP kindly chose ESRT as their charity of the year for their annual Trainee Ball in London, and through a raffle raised over £1860 for ESRT, getting us off to 2013 in a great way! This was supplemented by a very kind donation from a partner within the firm of £750. Scottish Widows also held an event late in 2012, raising £350. Finally, Billy Gilmour, Kevin O’Neill and Jess Barrow raised a whopping £694 for ESRT. January was a fantastic month for the charity, with the very kind fundraising efforts of these people getting 2013 off to a great start. February 2013 Sherbourne Police Station made a donation of £100 in memory of Vernon Norris. Further fundraising efforts by the family and friends of Mark Hughes raised the fantastic amount of £2,220. March 2013 Rivington Primary School donated £245, after being inspired by the story of Katie Dodd, a four-year old Ewing’s Sarcoma patient from Bolton, who was given the opportunity of life-saving treatment in the USA this year. An ex-pupil has also suffered from Ewing’s. As Katie loves “Barbie and Ken” they held a cake sale, guess the name of the teddy, and asked the pupils to dress up as either Barbie or Ken! 1st Acton Brownie Pack raised £270, after the leader’s great niece was diagnosed with Ewing’s, by putting on a play and show before Christmas, with stalls and a raffle. April 2013 In February we were sorry to hear of the passing away of Tim Woollcott, whose family asked for a retiring collection to be held for ESRT in his memory. Over the past couple of months we have received over £1,000 in Tim's memory by his family and friends. Yorkshire Building Society also made a further donation of £100. Also in April, Garnoc Sharks Swimming Club, which Mark Hughes joined as a seven year old, donated £520 raised at their annual gala. A further £520 was donated from a collection at the funeral of prominent Scottish politician James Jennings JP OBE, who was related to Mark Hughes. We're hugely indebted to each and every one of you - as well as to all the sponsors, donors and supporters we've met along the way. Why not follow ESRT on Facebook?
Research published today in Science journal demonstrates a genetic link between Ewing's Sarcoma, melanoma (skin cancer) and glioblastomas (brain cancer). Researchers at Georgetown University School of Medicine, Washington, found defective copies of a gene called STAG2 in 21% of Ewing's Sarcomas, 19% of glioblastomas and 19% of melanoma. A researcher said "mutations in STAG2 appear to be a first step in the transformation of a normal cell into a cancer cell." This research may open up an opportunity to develop new drugs which target cells wih defective STAG2. Theoretically, this could prevent some cancers forming. One of the lead researchers, Professor Todd Waldman of Georgetown University, said that having identified mutations of STAG2 in a "substantial fraction of Ewing's Sarcoma tumours, [we] can begin to develop strategies to specifically kill cells with mutated STAG2 genes" which would hopefully allow treatments to "kill the cancer cells but spare the patient's normal tissue." The concept of the research is based around the idea of aneuploidy, which is a hallmark of most cancers. Aneuploidy is an abnormal number of chromosomes in cells, which it is believed can trigger the development of tumours. Researchers in the study found a range of tumour types harboured deletions or inactivations of STAG2. STAG2 is effectively a gene which controls the separation of chromatids during cell division. Researchers found that deliberately inactivating STAG2 in normal cells led to chromosomal defects and aneuploidy. They also went further with regard to glioblastoma, by correcting mutant aspects of the cells, which resulted in increased chromosomal stability - thus the number of chromosomes was less likely to become abnormal. STAG2 encodes a sub-unit of cohesin, which is a protein complex involved in regulation of the inner workings of every human cell. Specifically, it is required for cohesion of sister chromatids after DNA replication, which occurs whenever cells replicate. Previous studies have shown that the deletion of chromosomes under the control of STAG2 have been observed in other cancer studies. In all of the instances where a Ewing's Sarcoma tumour was studied, there were somatic (tumour specific) mutations. The mutations in the STAG2 gene were consistent with functional inactivation. Researchers then attempted to treat the mutation with a DNA inhibitor, which led to minimal or no re-expression of STAG2 in samples derived from a female patient. This led them to believe that the "wild-type" allele of STAG2 was on the inactivated X chromosome. The fact the treatment had little effect suggests that chromosomal inactivation was responsible for the single-hit inactivation of STAG2 - that is, a single mutational event caused the inactivation of STAG2 in these chromosomes. Researchers observed "robust STAG2 expression" in noraml tissues, however, a significant number of the three cancer types studied demonstrated a "completely lost expression of STAG2". Furthermore, adjacent stroma, endothelial cells and lymphocytes were STAG2 positive, which supports the conclusion of researchers that STAG2 inactivation is tumour specific in nature. Part of the study also involved inducing STAG2 inactivation in cells to determine the effect this would have upon healthy cells. STAG2 proficient cells demonstrated virtually perfect chromatid cohesion, which was effectively cancelled by knocking out the STAG2 gene. Conversely, when STAG2 deficient chromatids were corrected, defects in chromatid cohesion were largely reverted (corrected). Imaging of untreated asynchronous cells revealed several deficiencies in STAG2 deficient cells, which is a characteristic of aneuploid divisions. This led researchers to conclude that STAG2 inactivation resulted in altered chromosomal counts (that is, aneuploidy itself) in these cancer cells. The conclusion of the study, published in Science, is that "STAG2 is likely to function as a "caretaker" tumour suppressor gene that, when inactivated, results in chromosomal instability." This study demonstrates the sorts of discoveries that can be made when funding is available for researchers. The finding that 21% of Ewing's Sarcoma tumours demonstrate STAG2 deficiency means this research has the potential to affect treatment of 1 in 5 Ewing's Sarcoma sufferers, statistically a huge number. With thanks to Professor Todd Waldman of Georgetown University for providing a copy of the study.