Advocacy and Educational Efforts
Timeline of our advocacy work
September 2024
September 2024
FDA Advocacy Letter for expansion of treatment access
August 2024
August 2024
Rare Across America Virtual Participant
August 2024
August 2024
University of Toledo College of Medicine and Life Sciences Patient and Family Experience Conference
Speaker: Pompe disease
Toledo, Ohio
May 2024
May 2024
Acid Maltase Deficiency Association & International Pompe Association International Pompe Patient and Scientific Conference
Speaker: “How to monitor LOPD patients diagnosed through NBS”
San Antonio, TX
March 2024
March 2024
Rotary Club of Defiance
Guest Speaker
Defiance, Ohio
February 2024
February 2024
Rare Disease Week in D.C. In-person Participant
Washington D.C.
October 2023
October 2023
Ohio State Advocacy Day
In-person Participant
Columbus, Ohio
August 2023
August 2023
University of Toledo College of Medicine and Life Sciences Patient and Family Experience Conference
Speaker: “Pompe disease”
Toledo, Ohio
October 2022
October 2022
Anatomy & Physiology and Biology classes
Guest Speaker: “Pompe disease and Newborn Screening”
Defiance High School