Newsletter September 2025

This is the sixth issue of our newsletter.

In this issue, you will learn more about:

• Our heroes
  • Holidays with a disabled child: why they count for more than you think
  • Donations in memory of loved ones
• Activities in the community
  • REMEDS The international patient registry and medical survey platform for MECP2 Duplication Syndrome 
  • Survey results: MDS families ready for clinical trials
• Research highlights
  • ATTUNE study: 6 clinical sites currently open for recruitment
  • Promising early results from the HERO Trial for MECP2 Duplication Syndrome
  • A new step forward in the search for a cure: UMass Chan licenses siRNA technology  
• Save the Date
• Summary of past events
• Our sponsors

P.S. Don’t hesitate to reach out to us with your feedback, stories, or suggestions. Your voice matters, and we are here to listen and support you every step of the way.