Looking Back at 25: The importance of CRY’s Memorial Funds

For the past 25 years, bereaved families have reached out to CRY for support and solace in their darkest of times. CRY has – and always will be – here for those families and individuals, with our team on-hand to help and guide them as they try to navigate their way through the often-unchartered territories of grief, loss and confusion.

There are many ways CRY provides specialist support to bereaved families, partners and friends, at whatever stage of their grief they find us. It might be through CRY’s unique, peer-to-peer bereavement support network or by guiding them through pathology and cardiac referral services.

However, for many, it is through setting up Memorial Funds with CRY, that they can truly feel they are creating a legacy and lasting tribute to the person they have lost, providing them with an opportunity to play a proactive part in funding services (such as screening and research) that may prevent other families from ever having to go through the same devastating grief as they have experienced.

Since CRY was first established as a charity in 1995, almost 670 Memorial Funds have been set up by families wishing to raise funds to help support CRY’s work. This unique model, developed and sensitively maintained by CRY, allows families to “formalise” all donations made in memory of the young people they have lost, which will go directly towards CRY’s core funding. In simple terms, core funding is used to support our key aims:

  • raising awareness of young sudden cardiac death (YSCD) and how it can be prevented
  • support for affected families or those living with a condition
  • research into YSCD and the conditions that can cause it
  • and of course, our pioneering screening programme.

Most CRY families choose to support core funding with their Memorial Fund. Diana and Andy Hunt are long-standing supporters of CRY since the death of her son Matt on February 19th 2010, just short of his 30th birthday. As well as Diana training as a bereavement supporter for CRY, Matt’s friends and family have raised over £40,000 for core funding.

Diana says: “Team Matt was born in 2010, the year that our beloved son Matt Hadfield died. That was when we discovered CRY; when his school friends became the founder members of Team Matt and raised sponsorship for CRY by cycling from Land’s End to John O’Groats in memory of their friend. Our team now is made up of those who loved Matt and want to keep his memory alive and every year we meet up to do things in his name.

“For us, it was important to set up a Memorial Fund for Matt to support core funding as everything that CRY does is so vital. Awareness is really key as people first need to find CRY so they can access all the many support services CRY offers, whether it is the bereavement support network, or the support available for people identified with serious conditions. In addition, there is informed expert pathology to help understand what caused the death or referral to the cardiology specialists, and also the opportunity for so many young people to be screened thanks to CRY. The research programme is also really important, not only to train the next generation of specialist cardiologists but also to bring about the changes that families want to see happen. Every pound donated to core funding makes such a difference and that is why we as a family decided that everything raised in Matt’s memory would support core funding.”

The CRY Memorial Fund framework is also distinctive in the freedom it gives families to ring-fence their fundraising for specific areas. Supporters have the chance to choose, if they so wish, to directly fund a certain area of CRY’s aims. For example, screening events for people in their local area, or research and pathology based at St George’s, University of London.

Funding for our research is vital to ensure that we can continue to further our understanding of YSCD. This financial support allows us to fund our team of doctors and pay for state-of-the-art equipment to assure they can carry out their work as effectively as possible. This couldn’t happen without the help of our supporters, who either donate to our research programme as a whole or fund specific research projects.

Professor Sharma (right) with Dave and June Boulton at CRY’s Family Research Day.

Dave and June Boulton are some of the CRY supporters backing our research. They’ve raised well over £100,000 in support of CRY following the sudden death of their son, Jack, in 2009, and have made significant contributions towards research, including a £50,000 donation in 2017. “It’s important for families like us to know where fundraising efforts need to be channeled,” Dave said at CRY’s 2019 Family Research Day, as he and June joined CRY Chief Executive Dr Steven Cox to look around our research facilities at St George’s. “[CRY is] providing a service that is really quite unique.”

Professor Sanjay Sharma joined the Boulton’s to talk about CRY’s research, and summarised why he believes CRY’s research at St George’s is so important: “I think this marriage between Cardiac Risk in the Young and St George’s is particularly unique because it actually encompasses all of the specialities that are required to understand and prevent death in young people.”

Traditionally, a significant proportion of CRY’s funds are reserved by families specifically for screening. In 2019, CRY screened more than 32,000 young people in a year, and we were on course to exceed that record in 2020 before were hit by COVID-19. However, the fact that CRY screenings are booked well into 2022 is testament to the amazing efforts of our supporters and their local (and wider communities) who continuously organise and take part in all kinds of events and challenges to raise funds to help save young lives.

Another recent example of some incredible fundraising efforts through a CRY Memorial Fund is that of David and Sue Hughes, from Stoke on Trent.

Along with their daughter Kim, David and Sue Hughes have raised over a quarter of a million pounds for CRY, leading to over 2,300 heart screenings for young adults in memory of their son Daniel who died in 2015, aged just 28. To date, 62 young people have been identified and referred for further investigation for a potentially dangerous heart condition, through screenings funded by Dan’s Memorial Fund. One 17-year-old girl was diagnosed with complete heart block at one of our screening sessions and underwent an operation to have a lifesaving pacemaker fitted.

However, in addition to this tremendous commitment to screening, the Hughes family also decided to use monies raised in memory of Daniel to purchase a new, state of the art mobile screening unit and an ECG machine.

David and Sue Hughes (left) with the new screening van they funded and members of CRY’s screening team.

David said: “We will never know for sure if heart screening would have saved our precious son’s life but what we do know is we never want another family to go through what we went through. Following Dan’s death, we made a commitment that we would do all we can to support CRY’s heart screening programme and raise awareness of the dangers of YSCD. It’s something we as a family take very seriously and with the help and generosity of our many supporters, we have been able to exceed our original targets thanks to the money raised through Daniel’s memorial fund.

CRY Chief Executive Dr Steven Cox says: “Over 25 years, we have seen so many amazing families – somehow able to look beyond their own, devastating grief – who go on to do extraordinary things to help raise funds and awareness that will make a real difference in preventing another family having to suffer in the way they have.

“The CRY Memorial Funds were the idea of our Founder, Alison Cox MBE, who, back in the mid-1990s, recognised the importance of families being able to keep the name of the child, partner, parent or friend at the heart of everything they did in their memory. CRY would always act as a ‘steward’ of their funds and to ensure it was professionally channelled into areas of need or – if they so wished – directed back into their local community to help protect local, young people.

“But it was, and always will be, absolutely vital to us that the name of that person that everything had been done in memory of will never be forgotten. And this is an ethos we will continue to honour as we as move into the next phase of our story…”

Dr Cox continues: “In recent years, we have seen more families expressing a commitment to fund research or the training of a new generation of specialist cardiologists, through our innovative Research Fellow programme. Essentially, in supporting research, they are also supporting the future of the CRY screening programme and the leading NHS referral Centre for affected families at St George’s Hospital in London, as well as enabling CRY to take forward ambitious research projects which will help to save young lives.

Supporters at the 2019 CRY Heart of London Bridges Walk, gathered to walk in memory of 150 young people.

“Research and state of the art equipment is the key to developing refined and even more cost-effective testing techniques that will, one day, lead to a national network of screening for all young people to identify these insidious heart conditions.”

CRY feels very proud to be able to say that over 83p in every pound we spend goes towards raising awareness, support, screening and research. 2018-19 saw the charity’s most successful financial year yet with our supporters raising a phenomenal amount of over £3.83 million.

Unfortunately, though, like so many other charities across the UK, the COVID-19 pandemic has had a massive impact on the ability of supporters to fundraise (due largely to the cancellation of the majority of supporter-led events or mass participation challenges, such as the London Marathon). This has led to a significant drop in donations for all charities – and as we might expect, a drop in the number of families contacting us with the aim of raising funds for their Memorial Fund.

Dr Cox concludes: “There is no doubt that these are incredibly challenging times for the entire charity sector. However, CRY Memorial Funds are the backbone of CRY, a unique organisation that has done so much to save young lives. We have been overwhelmed (although not surprised) by the resilience and passion of our supporters over the past 6 months. ‘CRY families’ are amazingly committed to the cause and we have watched them embrace and enjoy so many new, innovative, socially-distanced and often virtual ways of fundraising. As ever, every pound donated to CRY will help to support future screening dates, research, or CRY’s core funding to maintain ALL our necessary services. On behalf of all the team at CRY, I would like to take this opportunity to say a huge thank you to all of our supporters.”

If you have any questions about setting up a Memorial Fund, or would like to talk about which area of CRY’s work your donations could be most effectively allocated to, for the most immediate impact, please do get in touch by calling 01737 363222 or by emailing cry@c-r-y.org.uk