We are so excited to introduce Chrissie Brock as our new Siblings Ambassador. After meeting at our 2023 PURA Conference in the UK, Chrissie reached out to volunteer to help the Foundation to fill the role of our Siblings Ambassador. She has spent the past few months learning about the siblings programs that other rare disease organizations offer and has been putting together a plan for our PURA Syndrome siblings that will begin rolling out in the new year. Enjoy reading her bio below and welcome, Chrissie!
My name is Chrissie. I’m the older sister to Karen, who received her PURA diagnosis the day before her 41st birthday in 2019. Karen lives in Melbourne where we were both born and brought up. I now live in England with my husband and two dogs.
I hope that by helping to set up a siblings network with the PURA Syndrome Foundation, we can create a community for siblings of our wonderful PURA people to meet, share stories and exchange experiences. Chrissie can be contacted at siblings@pura-syndrome.org