The tongue cancer charity which is finding its voice

Barbara Fountain-Reed is the CEO and Founder of Young Tongues, the peer-to-peer support group made up of young people who have been diagnosed with tongue cancer. Here, she shares her long-term ambitions for the newly registered charity

Since last featuring Barbara Fountain-Reed, in 2021, she has marked a number of milestones. She got married; Young Tongues, the peer-to-peer support group she founded after being diagnosed with tongue cancer in 2018 at the age of 31, became a registered charity; then, on New Year’s Eve 2023, she marked five years since her diagnosis. Young Tongues is made up of young people (in their 20s, 30s, 40s, 50s) who have been diagnosed with tongue cancer, from all over the world. Since its inception, it now offers support to over 500 patients and survivors through Facebook and WhatsApp groups; shares practical resources across social media platforms, and holds regular virtual and in-person meet ups in the UK and USA.

Barbara, who is originally from Switzerland but came to the UK at the age of 20, says: ‘That’s amazing – the fact we have been going this amount of time and are still growing.’ And she adds: ‘We have created an extra support platform for supporters,’ which is a response to the ‘immense stress, worry and anxiety that is put on caregivers, families and friends.’

The charity is also eager to build relationships with medical care providers, as Barbara says: ‘We are here to help health care professionals help young patients. For example, a young patient might need advice on issues around intimacy more than, say, an 80-year-old patient would. Barbara got married in the summer of 2022 and credits her husband for being with her every step of the way. She is also very honest about the impact tongue cancer can have on relationships such as hers.

When she set up Young Tongues, Barbara was hoping to return to her career as an Events Concept Designer (as Founder of Breed Events). ‘After Covid I returned to my events company and I worked the festival season but the trouble with events is it is just not supportive.

‘It’s a go big or go home type of industry after that summer I came home broken physically and mentally it took two months to recover from the summer.’ Giving that up was a hard decision for Barbara to make: ‘This was the thing I really wanted to do. I felt a bit defeated by the cancer. This was my life’s work.’

However, since a callout on LinkedIn, in April 2023, Barbara has worked part time as a Fundraising and Communications Officer for Oracle Cancer Trust, the UK’s leading national charity dedicated to head and neck cancer. ‘Oracle Cancer Trust has been extremely accommodating,’ says Barbara. ‘It’s been a very positive experience.’

Then, at the start of the Autumn and after a lot of behind the scenes work, Young Tongues was granted charitable status. Barbara has been busy focusing on setting up the legal and organisational framework to help the team professionalise the services and work towards charitable objectives. ‘Being a UK registered charity, but operating on a global scale, has added an extra layer of complexity, but I’m slowly but surely navigating my way through the different processes.’ Getting a bank account, for example, has been a challenge. ‘We literally got our bank account a week ago. It’s been a very steep learning curve.’

Towards the end of last year, Barbara went to a Young Tongues meet-up in London and was ‘super proud’ to hear how one young woman, who had read a Young Tongues post on Instagram around Head and Neck Cancer Day, had pushed for a biopsy referral and subsequent tongue cancer diagnosis: Thanks to the support of the Young Tongues community, the woman said she didn’t felt scared about the diagnosis. Barbara admits: ‘I cried.’

New Year’s Eve marked five years since Barbara heard the words: “I’m sorry it’s bad news, you have tongue cancer.” She found the fifth anniversary somewhat harder than previous anniversaries. Also, on that day, the charity learned of the passing of a much loved and appreciated member of the community: Dr Leila Etaati.

Since the start of 2024, Barbara has been interviewed by BBC Look East for a report raising awareness of the increase in tongue cancer cases amongst younger patients – mouth cancer rates have soared over the past 20 years. ‘What we really want is people getting diagnosed early,’ she says. She hopes stories such as this will encourage people to see their dentist or GP should they experience symptoms for more than three weeks. She also hopes the cause will get some attention by MPs in the region, in the run up and beyond the next election.

Young Tongues remains committed to raising awareness and advocating on behalf of young tongue cancer patients. ‘One of the things we are working on now is building a brand-new website’, she says. ‘We want to present it in a way that is easy to navigate for someone who hasn’t been diagnosed yet, for someone newly diagnosed; and for someone who is years down the line.’ In fact, the charity plans to offer a platform for tongue cancer ‘alumni’, those who don’t fit into the 18-64 age bracket anymore. ‘We need this second group, to discuss types of challenges which come up 10 years after treatment,’ she says. Barbara is looking forward to being able more support platforms on the website. ‘How great would it be if we could have everything in one place?’

Young Tongues’ ambitions go far beyond the initial concept. ‘I first came at it as a patient needing to find my own support,’ says Barbara. ‘I felt so alone. Being able to connect with others, from a mental health perspective, was so empowering – it helped me get the professional help I needed. And it opened my eyes to realise there was a huge demand from hundreds of people in the UK and beyond, including countries who don’t have the type of health care we have.’

She cites the example of someone diagnosed in South America who used the support group to find out what sort of operation they needed. ‘Then they had to travel for days,’ notes Barbara. ‘Wouldn’t it be great in the future we could raise enough money for a young surgeon to come here and study?’

Barbara is aware that Young Tongues is ‘growing into a different beast.’ She concludes: ‘The more people I talk to the more I learn in terms of what’s actually needed.’

On March 16, 2024, Barbara Fountain-Reed will embark on a 100km trek through the desert in Jordan, to celebrate five years of being cancer free and to raise vital funds for Oracle Cancer Trust. Visit justgiving.com. To boost Barbara’s fundraising, she is organising a couple of ‘Netwalk with Barbara around Whitlingham’ events in Norwich: Friday 26 January 2024 at 07:30 (Eventbrite) and Friday 16 February 2024 at 07:30 (Eventbrite). Visit Young Tongues and follow @youngtonguesglobal on Instagram and Facebook.

Featured images – supplied