A Day with Acadia- Part 2: Assurance

One thing Bill Keller said that really resonated with me because of the sincerity and sense of duty that he said it with- (paraphrasing here) “I met Steve Kaminsky and he told me that since this drug (Trofinetide) existed it was our responsibility to get it to families.”

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 […]

Rett syndrome nutrition & the big second brain (your tummy)

Good nutrition is the building block of a healthy brain. New research is telling us really important stuff about the gut and Rett syndrome nutrition. How it is now seen as our second brain and also as a window to our brain health. Our guts are incredible things; they’re also one of the most important cogs […]

The Trofinetide trial is important to Rett syndrome.

We now know what Rett is, what causes it, where it’s located. We have proven it’s reversible and for the very first time, we potentially have a treatment that could profoundly impact the disorder. Crucially, improvements were shown after less than 2 months. Because of the way Trofinitide works, we could expect to see continued […]

Keep looking forward.

In October we called our awareness campaign the HOPE campaign, because we wanted to talk about the things that we are hopeful about. We wanted to talk about how all those little things are slowly coming together, helping us progress, and how every day we are beating Rett syndrome a little bit at a time. […]

More about the #REALLIFERETT Campaign

Trish and I discussed the #realliferett campaign for some time, even after she had finished the blog post she was worried that it might be too raw, too emotional. What she has done is incredibly honest and brave. I think most parents dealing with Rett syndrome are brave, but society doesn’t like them to be […]

Real life Rett

#realliferett was born in a moment of deep frustration, a ‘screw you all, this is what I have to deal with’ kind of moment in the midst of yet another hurdle in the life that is Rett Syndrome. I was lying next to Lily in her ‘sick bed’ that we set up in our bedroom […]