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 – ClinicalTrials.gov
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
Dame Margaret Brimble
Bruce E. Maryanoff – Topiramate
GET IN TOUCH!
Let me know what you think about the Remarkable podcast and these amazing Rett Syndrome families.
Thanks so much for listening,