Mel’s daughter Katelin is 26 and living with Rett Syndrome. 

It was such an honour to sit down with Mel not only once, but twice, for the podcast. I openly admit that I have alot of learning to do, so talking with Mel was such a great learning experience for me. 

We talk about a range of things – from her writing, to Atypical Rett Syndrome, to the clinical trials they were involved in. Mel’s blog Trail to a Texas Trial is an amazing recount of everything they’ve experienced with Rett Syndrome and with the Trofinetide trial. 

This is Part 1 of our chat! 

Links to the topics we discussed:

Atypical Rett Syndrome info

Mel”s Blog – Trail To A Texas Trial –

Girl Power 2 Cure – Active and Anticipated 2019 Rett Syndrome Drug Trials
Blog posts about Clinical Trials

U.S. National Library of Medicine –

Acadia Pharmaceuticals – Trofinetide – Rett Syndrome info

Neuren Pharmaceuticals – Trofinetide (also known as NNZ-2566) in Rett Syndrome

Rettland Foundation – family support

Medicinal Chemistry Hall of Fame – Dame Margaret Brimble
Brimble Group
Dame Margaret Brimble

Bruce E. Maryanoff – Topiramate



Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families. 



Thanks so much for listening, 


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