CRY Update 81: News from the Chief Executive

By CRY Chief Executive Dr Steven Cox

Thank you for everything that you continue to do to support CRY and raise awareness within your local communities. Included in this section are a number of media stories from January to April, as well as information about some of CRY’s events in this period.

CRY supporters featured on BBC Inside Out – January 20

Thanks to the work of the CRY Centre for Cardiac Pathology (CRY CCP) led by Professor Mary Sheppard, we have been able to increase the number of families we are able to help after a young sudden cardiac death.

Long-time CRY supporter Sue Dewhirst was interviewed on a BBC Inside Out feature, and talked about her experiences of family testing after the death of her son, Matthew.

“It’s a day we’ve been waiting for, for quite a while really,” Sue said when going for testing. “It would be good to have some closure and to just really get to the crux of things.”

It’s so important for families to have access to this essential support service funded by CRY, both to help them better understand what caused the death but also to ensure relatives can receive any treatment they may need if a condition is hereditary.

Professor Elijah Behr, who works at St George’s Hospital, helped explain how important it is to carry out family testing: “We’ll find out if she shows any signs of inherited heart disease herself. We suspect that because of her son’s unexpected sudden death at such a young age. We find that in around 40% of families, if we do very comprehensive testing, we’ll find there is an underlying genetic cause.”

“Our main aim was always, when we donated Matthew’s heart, was for some good to come out of all of this,” Sue said after her family’s testing had been completed. “If it does mean that others can benefit from it, then he’ll have achieved something.”

Ann Demaine, who lost her son, Tom, spoke about her motivation for supporting CRY. “We just do not want any other families to have to go through the heartache,” Ann said. “So anything you can do to prevent that, even if it’s just one – but it’s not, it’s 12 deaths a week, possibly more.”

It’s fantastic for CRY to receive this kind of exposure, and for the importance of the research and testing we do to be highlighted.

Abby Lang interviewed on the “We Can Change The World” podcast – February 7

Abby Lang has been a tireless supporter of CRY for some time now, working to rally as much MP support as she can around England and Scotland. She’s been an integral part of us increasing the amount of MP signatures we have on our pledge to establish a national strategy for the prevention of young sudden cardiac death, and also gave the 2018 Time for Reflection speech at Scottish Parliament and spoke at the CRY Parliamentary Reception later in the same year.

In February, Abby continued to raise awareness of CRY and what we’re doing to save young lives in an interview on the We Can Change The World podcast. Abby shared some of CRY’s key statistics, what our screenings are like, and the importance of gaining MP support.

“The whole reason that CRY has to offer this [screening] service,” Abby explained, “is because there isn’t currently screening on the NHS, and that’s primarily due to the National Screening Committee, which is the governing body which advises ministers and the NHS on what screening programmes should be in place and what shouldn’t. They currently don’t recommend a screening programme for sudden cardiac death in 12-39 year olds. Obviously that’s, you know, quite frustrating and devastating for myself and CRY and all of the other CRY supporters and families who have been affected out there. I would like to encourage anyone who is listening to this or has been personally affected by the loss of somebody to young sudden cardiac death or knows somebody, if your MP hasn’t signed, please get them to do so. We’re in desperate need of more support.”

Abby also spoke about her speech at Scottish Parliament, and touched on why she’s motivated to support CRY.

“There are hundreds of families out there who are fundraising for CRY, but there are also many families who are too overcome by grief and find it too distressing to actually speak about the matter to get involved. So, I feel like I need to act as a voice for them because I know that they wouldn’t want other families going through the same loss that they have. I just don’t want them to be suffering in silence.”

Abby was a runner-up at the Young Scot awards in November 2018, which is an annual event that celebrates young people who are making a difference in their local community. We are so grateful for Abby’s efforts, and for all of our supporters who continue to raise awareness of CRY and gather MP support when possible.

You can listen to Abby’s full interview on the podcast by going to bbc.co.uk/sounds/play/p081j9m2

“For Natasha” concert held in support of CRY – February 16

Arjun Coomaraswamy, a highly acclaimed singer songwriter, suddenly lost his wife, Natasha, in 2018 when she was just 30 years old. In February, Arjun assembled a host of artists and organised a concert, “For Natasha”, to remember her, as well as help raise awareness of CRY and young sudden cardiac death.

The concert was held at the Hammersmith Apollo in London, featuring performances from artists such as Mickey Singh, Vidya Vox, Jaz Dhami, Guru Randhawa, and Arjun himself. Natasha’s parents also took the stage during the evening and delivered a touching speech.

The atmosphere was incredible with phenomenal support for Arjun, Natasha’s family and CRY throughout the night. It was a privilege to be invited along with CRY’s Consultant Cardiologist Professor Sanjay Sharma to be part of this special evening. Thank you to Arjun, Natasha’s family, and everyone who made this event such a success.

The 2.6 Challenge – April 26

Due to the coronavirus pandemic, fundraising changed drastically in this period and largely came to a halt. But this didn’t stop the organisers of the Virgin Money London Marathon from creating the 2.6 Challenge in an effort to keep activities and fundraising going.

Thank you so much to all of our supporters who got involved to keep fundraising for CRY during this difficult time, organising their own activities from 2.6-mile runs, to “keepy up” football and hockey challenges, to video game marathons.

To read more about the 2.6 Challenge and see some photos from those who got involved, go to page 14 of Update 81.