Leap of Faith
Uncategorised
Mel

Challenge Accepted!

From: Trail to a Texas Trial It hasn’t happened before. I was given a MISSION, if I chose to accept it, to explain some new developments in regards to Sarizotan (Newron) and Anavex 2-73 (Anavex) receiving FDA Rare Pediatric Disease Designation: “Mel Lancaster have you posted about these announcements or am I just behind on things? Have you deciphered it for parents who are new and may not get all of this yet?” Let me just say I was quite flattered! So, never one to step away from a challenge… Here we go. One of the first hurdles for these

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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.”

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Hot off the Presses- The Horses are Outta the Gate!

Well yesterday’s post WAS going to be the last one this month but then I got an email from Acadia- “Hot off the Presses” it said and then this announcement- ACADIA Pharmaceuticals Initiates Phase 3 Pivotal Study of Trofinetide in Rett Syndrome, a Rare Neurodevelopmental Congenital CNS Disorder  The tears started around the word “initiates” and by the time I got to “Trofinetide” I was a blubbery mess, snot and all. Within minutes of posting it to Facebook, I got a call from another mom and there we were the two of us crying, swearing, cheering, making no sense and

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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 event for the employees of Acadia… because the EMPLOYEES wanted to know more about it and to get a sense of the families and children they are working so hard to help. Now, had Bill told me the scope of the audience I still would

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Hi Im Carys
Army of Us
Duncan

Rett syndrome Awareness Month 

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 information 1. Inclusion Army of Us has always been about inclusion, in the last couple of days I asked people to give us a little feedback about what we do for them. We are primarily an Awareness group, that is our function. Awareness Month is

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Don;t be their voice, amplify it
Army of Us
Duncan

My Rett journey

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 professional and scientific community is making strides in to both treatments and possible cures all the time. Pushed on and funded by so many excellent Charities. I’m not going to kid you, it’s still a hard diagnosis but there is genuine hope right now. A

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