Research Updates

Sci Spotlight- August 2026

Updates from the Director of Scientific & Clinical Initiatives August 2026 Last month, we co-hosted a closed-door research symposium alongside the Angelman Syndrome Foundation. While the exact details of the meeting cannot be shared for confidentiality purposes, I...

Sci Spotlight- July 2026

Updates from the Director of Scientific & Clinical Initiatives July 2026 This newsletter is going out a day late because I spent parts of last week at the Dup15q/ASF Research Symposium! While there, members of the Alliance team heard dozens of researchers speak...

Sci Spotlight- June 2026

Updates from the Director of Scientific & Clinical Initiatives June 2026 The Office of Management and Budget (OMB) has proposed significant changes to the federal regulations determining how federal research grants are awarded and managed. These changes could make...

Sci Spotlight- May 2026

Updates from the Director of Scientific & Clinical Initiatives May 2026 Hopefully you already know, but we hosted our 9th annual Big Give this past Wednesday! As part of the program, we heard talks from some of our esteemed researchers, clinicians, and biotech...
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