The National Alliance of Childhood Cancer Parent Organisations (NACCPO) was founded in 1999 at a meeting called by Prof. Mike Stevens, then a Paediatric Oncologist at Birmingham Children’s Hospital. Prof. Stevens was a great supporter of parent involvement and the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).
Prof. Stevens organised the first formal NACCPO meeting to address the lack of a national parent group and minimal input in children’s and parents issues internationally, He worked with Geoff Thaxter of the Lisa Thaxter Trust (LTT), which became a founding member of NACCPO. Geoff was a driving force throughout our first ten years.
The other founding members were: Candlelighters, Forget Me Not Trust, Retinoblastoma Society (now the Childhood Eye Cancer Trust), CHICS, PASIC, COPARS and SPoCC and ROHBoTS.
The first meeting focused on need for a national voice to address issues such as insurance and employment for survivors. Other early meetings focused on recruiting other groups and encouraging parents to form groups in treatment centres where none existed.
NACCPO joined the International Confederation of Childhood Cancer Parent Organizations (ICCCPO) in 2002 and Geoff Thaxter volunteered to be our ICCCPO representative. Until he passed away in August 2008, Geoff continued to work tirelessly for both NACCPO and ICCCPO. We owe him a great debt of gratitude and miss his input greatly.
Membership gradually increased, and we began fielding parent representatives to various research projects and committees. In 2004, we recruited a part-time Operations Manager to oversee all these activities.
On winding up activities in 2010, the Lisa Thaxter Trust made a significant donation from residual funds, which enabled us to continue Geoff’s national and international vision to improve care for our country’s children.
In 2010, we decided to rebrand, to become the Childhood Cancer Parents Alliance (CCPA). Though our name has changed, we retain our original ethos, working together for children and young people with cancer and their families.
As the national body for parent and associated childhood cancer groups in the UK, we were proud to host the ICCCPO congress when the SIOP World Congress came to London in 2012. Our then vice-Chair, Abby White also served as parent/survivor representative on the Local Organising Committee for the SIOP congress, a highly successful event attended by more than 2,000 medical professionals, parent and survivor advocates from around the world.
ICCCPO itself rebranded in 2014 to become Childhood Cancer International (CCI). We continue to work closely with CCI, SIOP Europe, World Child Cancer and parent groups globally to improve research, treatment and services for children with cancer no matter where in the World they live.