Part 2 of my chat with Mel for the Remarkable podcast.
Again, we had such a great time chatting about everything they’ve experienced with Rett Syndrome. I didn’t know much about clinical trials for Rett Syndrome beforehand, so I’m so glad to have spent the time with Mel and soak in the knowledge she has.
Please remember to check out her blog for more info about their lives with Rett, and check out some of the links below if you’re interested in the clinical trials available where you are.
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!
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Thanks so much for listening,
Tracey