In 2012, for the first One Retinoblastoma World meeting in London, we produced a beautiful Alphabet of Hope, with insights and reflections from families affected by retinoblastoma around the world. Every 2 weeks throughout 2018, we shared via social media a different word and accompanying thought from the Alphabet, to help raise awareness of different experiences through the retinoblastoma journey.
Perspectives shared through Alphabet of Hope spoke to people who had no previous experience of childhood eye cancer, to family members, medical professionals and individuals with different personal experiences. It sparked conversation and gave a voice to subjects infrequently discussed.
Continuing the Alphabet
As our sharing of the Alphabet of Hope drew to a close, we began to think of how different aspects of the retinoblastoma experience could benefit from this simple form of expression, and whether we should continue with a new Alphabet in 2019.
Thankfully, there is now great focus on treatment and cure of retinoblastoma, the experience of living with childhood cancer, and supporting families through that very difficult time. Much progress is still needed to ensure all children have access to appropriate care, and the best opportunities possible, and families are well supported. But the future is looking bright. We hope to feature different aspects of this journey in future years.
The Survivors Alphabet
Life beyond the immediate treatment of eye cancer, and recovery from it, receives far less attention. Research has well-documented the genetics of retinoblastoma, heritable risk and second cancer risk. But this has not yet translated to recognizable care for most survivors. Nor have the mental health impacts of early life treatment and retinoblastoma burden been effectively researched and acknowledged.
To help give a voice to the survivor experience, we dedicate the 2019 Alphabet to the experience of #LifeBeyondRb. The content of this alphabet will be added throughout the year. It is developed by the international retinoblastoma survivor community, through collaborative discussion within a large and well established Facebook group.
Aspire: We survivors have the same hopes and dreams as do all people. Cancer has left its mark upon all of us, but we try to not let it define who we are and who we will become.