A Day with Acadia- Part 1: Awareness

This Blog is hosted on behalf of Mel Lancaster, whose original blog was silenced. I like to end this month on an up note and that presented itself when I was invited to speak at Acadia in San Diego. Bill Keller, Executive Director; Patient Advocacy and Industry Relations, of Acadia wanted to do a Rett syndrome Awareness […]

Rett syndrome Awareness Month 

Hi Im Carys

Why it’s important. The only way we will truly disrupt socially, is when we all share the exact same thing. This is a hefty read, here’s a summary. I will talk about : Inclusion, it’s more than just people living with Rett How going viral made a charity $50 Million New Diagnoses Bad information Good […]

My Rett journey

Don;t be their voice, amplify it

I wish that I knew what I know now. When I was younger. Rett syndrome is a better diagnosis now than it was a decade ago. I’ve been on this Rett trip for a while now, and my outlook has changed considerably throughout this journey. Volumes of studies, research and hard work from a fantastic […]

The butterfly effect

The Butterfly Effect On the 16 of September last year, in New York I went and got Flitty tattooed on my wrist. The tattoo represented my God daughter Carys and for me it symbolised a mixture of my hopes and dreams for Carys and all the girls I have come to know, but also most […]