Author: Alena Vincent

My name is Alena Vincent, I am a bilateral retinoblastoma survivor as was my mom before me and as is my daughter after me. I was invited to join CRRAB in the fall of 2018 and since then I have been involved in research meetings, symposiums, and research projects such as the Retinoblastoma Journey Maps.
 
This year I was asked to assist with the development of the Retinoblastoma Research and You! Booklet. For me, this was, quite honestly, the most exciting CRRAB project I’ve been privileged to be part of. I had such a fantastic experience. It was wonderful to see new faces and hear the opinions of other retinoblastoma parents and survivors as well as all the amazing professionals who made up the manpower behind this beautiful booklet. 

As a parent of a child with retinoblastoma, those early days after diagnosis are heartbreaking and stressful. It can be a very lonely and dark time and you feel like you’re getting a lot of paperwork to sign, but not a lot of information on what the future might hold. This booklet is not only a resource guide and research tool, but also a beacon of hope. The stories provided in its pages show that other children not only survived but thrived. It shares the message that we are a community filled with incredible patients, survivors, parents and professionals, and how crucial input from those affected is to the continued improvement of care. It gives something physical to those affected by retinoblastoma to know they are not alone, and that they will be heard, cared for, and valued.