17/06/2025
CDKL5 is a rare genetic disorder which mainly affects females, and shows itself in a broad range of symptoms.
Behind every diagnosis of CDKL5 is an individual and a family with a story to tell.
Every year, the entire CDKL5 community comes together to raise awareness, promote research, encourage collaboration, and raise vital funds to better the lives of everyone affected by CDD. International CDKL5 Day is on 17 June every year, in memory of Glyn Boltwood, who passed away on this day in 1997.
https://curecdkl5.org.uk/cdkl5-uk/
Reflect has the absolute privilege of supporting Anber and working closely with her Mum, Carol-Anne, who co-founded the CDKL5 UK charity.
This post is late in the day, but we couldn’t let it pass without sharing both the message and part of Amber and Carol-Anne’s story.
https://creators.spotify.com/pod/profile/marissa-bishop/episodes/Episode-14-Carol-Annes-Life-with-Amber-age-20-e30g39t
Carol-Anne is one of the OG CDKL5 moms! Her daughter, Amber, is nearly 20 years old and Carol-Anne has been on the scene getting involved for CDKL5 even before her daughter was officially diagnosed. She’s co-founder of CDKL5 UK, a professional social worker, and is passionate about supporting fami...