Parent Involvement Forum
Our Parent Involvement Forum is made up of parents, all of whom have been supported by Solving Kids’ Cancer UK at different stages through their child’s neuroblastoma journey.
The Parent Involvement Forum’s role is to ensure that the voice of parents (and, by association, children and young people) is always heard and informs the charity’s activities and support. The members attend regular meetings to share their views and ideas, helping to shape our projects and plans.
Naomi BenthamNaomi first became involved with the charity in 2012 when her daughter Anya was diagnosed with stage 4 high-risk neuroblastoma. After Anya needed second line chemotherapy to clear the disease from her body prior to stem cell transplant, it became clear that they may need to access treatment outside the NHS and the UK in the hope of giving Anya the best chance of survival. Along with an incredible core team of fundraisers, Naomi and her family raised over £250,000. Without support from Solving Kids’ Cancer UK, this would not have been possible. After successfully completing frontline treatment, they enrolled Anya into the DFMO trial in Michigan in 2014 with the aim of helping to prevent relapse. Anya was the first child from the UK to enter and complete this trial. Naomi has continued to raise awareness of the work that Solving Kids' Cancer does through television and press interviews, social media, and word of mouth. Naomi has a background in Marketing and Communications and currently manages small businesses social media accounts through her role as a virtual personal assistant. Her life is devoted to having adventures with her husband Graeme, the incredible Anya, their youngest, Noah, and their two dogs, Jack and Louis.
Stewart LeaverStewart first contacted Solving Kids' Cancer UK in November 2017 shortly after this daughter Jossie, who was 4 years old at the time, was diagnosed with high-risk neuroblastoma. The family was treated at Great Ormond Street Hospital, and following multiple relapses that Josie experienced, travelled to both Barcelona and Germany to access clinical trials not available in the UK. Sadly, Jossie passed away in November 2019. Since Jossie’s death, Stewart has continued to take an active interest in Solving Kids' Cancer UK and wants to use his experiences to help inform the charity’s approach to supporting parents and families. Stewart lives in Hertfordshire with his wife Cassie, and Jossie’s younger brother Dougie.
Kate DixonKate’s involvement with Solving Kids’ Cancer UK started in 2018 when her son Magnus was being treated for high-risk neuroblastoma in Nottingham. With the support of Solving Kids’ Cancer UK, Magnus went on to access the bivalent vaccine clinical trial in July 2019. He remains no evidence of disease today. Kate has now managed to return to work as a mental health nurse and when not at work is kept busy with Magnus and his big brother’s busy social diaries.
Carrie WrightCarrie first became involved with Solving Kids' Cancer UK when her daughter Lucy, then aged eight, was diagnosed with stage 4 high-risk neuroblastoma. After completing the first stage of frontline treatment at Royal Manchester Children's Hospital, Lucy was identified as a refractory patient and as a result, took part in the MiNivAn clinical trial which was part-funded by Solving Kids’ Cancer UK. As the family live in the North of England, Solving Kids' Cancer UK reached out to support the family with their regular travel commitments to Southampton during 2019. After almost three years of treatment, Lucy was declared No Evidence of Disease in April 2021. Throughout Lucy's treatment, the family fundraised independently to raise essential funds to get Lucy to North Carolina to take part in the DFMO trial. Sadly, in October 2022 the family were told that Lucy had relapsed and treatment commenced back in the UK starting with chemotherapy. Lucy is currently receiving treatment in Leeds on a trial using naxitimab. Carrie gave up her career as a HR Consultant when Lucy was diagnosed and devotes her time to Lucy, now age 13, Lucy's younger brother Sam, six and husband Richard. "I'm so proud to be involved with Solving Kids’ Cancer UK. We've had invaluable support during our journey. It's vital that the amazing work continues and that families like ours continue to be supported through what will most likely be the biggest challenge of their lives".
Claire DonnellyClaire was introduced to Solving Kids' Cancer UK by another family after her youngest daughter Ellen was diagnosed with stage 4 high-risk neuroblastoma in January 2018, when she was aged two. Ellen underwent treatment in the Royal Belfast Hospital for Sick Children which she completed in April 2019. The family launched a fundraising campaign to enrol Ellen on a clinical trial in New York, with the hope that it would help reduce the risk of relapse. Ellen is currently in remission. Claire lives in Northern Ireland with her husband Patrick and two daughters, Lucy and Ellen. "We were very grateful to have the support of Solving Kids' Cancer UK during our campaign, and also their assistance and guidance in arranging our trips to New York for the duration of the trial. Their help has been absolutely invaluable to our family".
Garrett FitzgeraldGarrett’s involvement with Solving Kids’ Cancer UK began in 2018 after his youngest daughter Lauren was diagnosed with high-risk neuroblastoma in July 2018. After successful NHS frontline treatment finished in September 2019, Lauren completed the bivalent vaccine clinical trial at Memorial Sloan Kettering Cancer Center in New York in October 2020. Garrett is the Director of Freshways and lives in Northern Ireland with his wife Mary Clare and their four children.
Naomi Shefford-ThomasNaomi's youngest daughter Phoebe was diagnosed with neuroblastoma aged nine months and spent almost four years undergoing treatment, which she completed in 2019. The family were supported through much of that time by Solving Kids' Cancer UK, which included help in knowing where to find accurate and up-to-date information. With the support of Solving Kids' Cancer UK, the family were then able to make informed decisions with regards to Phoebe’s treatment pathway. Naomi lives in Leicestershire with her husband Russell and two daughters, Amelie and Phoebe. "I feel honoured to be part of the Parent Involvement Forum and look forward to being able to contribute to the important work of Solving Kids' Cancer UK".
We are not actively recruiting for any further members at this time, but if you would be interested in being a member at some point in the future or would like to learn more about the Parent Involvement Forum, please contact us: email@example.com