When meeting with Petra Maxwell, the Information and Research Manager from the Childhood Eye Cancer Trust (CHECT), Megan remarked that it was like connecting with a distant relative you’d always heard so much about but had never had the opportunity to meet! KTG and CHECT have embarked upon similar paths for years. While CHECT focuses exclusively on initiatives involving retinoblastoma in the UK, there are so many parallels that the links are uncannily similar.
As part of our awareness outreach efforts focused on the UK, we are honored to share about the incredible work being done by the whole team at CHECT and highlight their phenomenal partners working behind the scenes to help support their initiatives to build upon their four pillars of RB efforts.
Started over thirty years ago, CHECT was founded initially by parents who merged their parent support group into a team focused on fundraising for retinoblastoma research. After the passing of David Allen, a child diagnosed with trilateral retinoblastoma, the family was passionate about working to fund research into retinoblastoma.
Petra shared first about their work to Support Families to assist with the needs of anyone affected by RB…children, parents, teens, and grandparents! Their teen programs are inspiring as they lead the way with new efforts to build confidence, self-esteem, and awareness! Their work on Research efforts which include assisting in the funding of RB research and highlighting other initiatives happening around life with retinoblastoma during and after treatment, were discussed! Breakthroughs in technology and detection are particularly interesting to the team at CHECT. Awareness efforts remain a core part of their concern, with their efforts targeted not only at parents of young children but also at healthcare professionals with programs aimed at educating general practitioners and health visitors, as well as optometrists in the UK. Finally, their work surrounding Influence and Advocacy was discussed. Opportunities to help promote efforts to help to see the whole picture of the needs of families living through and with retinoblastoma and the long-term needs that need to be addressed from a support perspective are always of concern.
A team of nearly a dozen staff members, tremendous pro bono creative agency partners, and corporate and trust supporters are massively assisted by parent-family volunteers extending their reach as they continue to amaze us with their tremendously impactful media campaigns, fundraising programs, and awareness efforts.
One of their largest fundraisers is the LondonMarathon in April! Funds raised through these efforts continue to ensure that CHECT and its creative and inspirational teams will continue to be able to support and guide the 40 – 50 new patient families welcomed into the CHECT community each year. With RB being a condition that requires lifelong vigilance, there is a tremendous benefit to being surrounded by such phenomenal support. With many families being deeply engaged in their private journeys, it is wonderful to have the team at CHECT sharing stories, awareness, and information far and wide to help ensure that the path to and through care for tomorrow’s retinoblastoma survivors will be fully supported one and hopefully one with an earlier diagnosis and a more favorable prognosis thanks to early intervention!
KTG is proud to highlight the work of the team at CHECT and is thrilled to have them working to create even more spectacular ways to share the message about the need for early detection to parents throughout the UK and the importance of proper diagnoses and referral pathways to the healthcare professionals in the region! We look forward to sharing more stories about their fantastic work in the future and can’t wait to see what they come up with next!
