Category Archives: Congress

The Next Steps Through the Desert

Wow. While time has been passing, Neuren has quietly, behind the scenes,  been taking step after step and gaining ground with Trofinetide. Check out their latest announcements… http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=23a3caf0-969f-4269-824e-fe32548eefa9 http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=89e7ec87-31e5-4aa3-b029-0b449df3189c So, to me it feels like we went from full stop … Continue reading

Posted in Congress, cure, Neuren Pharmaceuticals, Orpan Drug Status, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | Leave a comment

A New Avenue…

for funding! From Rettsyndrome.org “On June 11, 2015, The Senate Appropriations Committee approved its 2016 fiscal year Defense Appropriations bill to include 50 medical conditions, including Rett syndrome, eligible to compete for funding. This news demonstrates the Committee’s dedication to … Continue reading

Posted in Congress, cure, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566 trial, Peer Reviewed Medical Research Program, rettsyndrome.org, Trofinetide | Tagged , , | Leave a comment

A Call to Arms!

We have yet another chance to influence the course of Rett syndrome research! Paige Nues, Director of Family Empowerment, sent out an email…In part it says: As the result of meetings just held in Washington DC, many of our elected … Continue reading

Posted in Congress, Intrepid 2566, NNZ-2566, Peer Reviewed Medical Research Program, rettsyndrome.org, TBI | Tagged , , , , , , , , , , , , , , , , , | 2 Comments