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
https://rarediseases.org/rare-diseases/rett-syndrome/
https://en.wikipedia.org/wiki/Rett_syndrome#Variants

Mel”s Blog – Trail To A Texas Trial –
https://trailtoatexastrial.wordpress.com

Girl Power 2 Cure – Active and Anticipated 2019 Rett Syndrome Drug Trials
https://www.girlpower2cure.org/news/upcoming-trials/
Blog posts about Clinical Trials
https://www.girlpower2cure.org/?s=clinical

U.S. National Library of Medicine – ClinicalTrials.gov
http://clinicaltrials.gov

Acadia Pharmaceuticals – Trofinetide – Rett Syndrome info
http://www.acadia-pharm.com/pipeline/rett-syndrome/

Neuren Pharmaceuticals – Trofinetide (also known as NNZ-2566) in Rett Syndrome
http://www.neurenpharma.com/irm/content/nnz-2566-in-rett-syndrome.aspx?RID=330

Rettland Foundation – family support
http://rettland.org/

Medicinal Chemistry Hall of Fame – Dame Margaret Brimble
http://www.mauricewilkinscentre.org/news/dame-margaret-brimble-inducted-into-acs-medi-hall-of-fame.aspx
Brimble Group
https://brimble.chem.auckland.ac.nz
Dame Margaret Brimble
https://en.wikipedia.org/wiki/Margaret_Brimble

Bruce E. Maryanoff – Topiramate
http://www.blumberginstitute.org/our-scientists/principal-investigators/member/10

 

GET IN TOUCH!

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

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INSTAGRAM https://www.instagram.com/remarkablepodcast

Thanks so much for listening, 

Tracey 

teamjovie.com

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