September 2025 Newsletter — Foundation mourns the passing of co-founder Michael Weiss; research highlights…

Table of Contents

  • Honoring APBDRF co-founder Michael Weiss

  • ASO therapy corrects intronic variant and restores GBE activity in APBD patients’ cells

  • Dr. Lindsay Gill champions GSD IV research at COMBINEDBrain Summit

  • Henry Daumeyer joins the Foundation team as Genetic Counseling Intern

  • Robin Knoll hosts Pampered Chef fundraiser

  • Foundation launches new website

  • Upcoming Chat events for patients and caregivers

  • Make a life-changing legacy gift

 
 
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July 2025 Newsletter — New addition to our team, updated prevalence estimates…and more!