Héloïse Hoffmann
Global Advocacy & Fundraising for Fsh Muscular Dystrophy @FSHD Society
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WORK HISTORY
Global Advocacy & Fundraising for Fsh Muscular Dystrophy @FSHD Society
Founded the SW Florida FSHD Society chapter to raise awareness and build a patient community. Raised nearly to date from almost 1500 donations over 4 years. Organized the Walk & Roll to Cure FSHD, with over 250 attendees in 2 years. Speaker at Magic for a Cure, raising over in one night.• Founded GenZ of FSHD, a global initiative to encourage youth advocacy and ensure no teen faces FSHD alone.• Keynote speaker at the 2022 FSHD Industry Collaborative Meeting, bringing together FDA & NIH officials, researchers, stakeholders, and pharma to carve the path forward. • Partner with biopharmaceutical companies to highlight the patient experience and help design clinical trials. Keynote speaker at several corporate biopharma events.• Speaker in panels and forums at conferences.• Guest in telethons and interviews.• Activism covered by major local magazines and TV channels.
EDUCATION
Stanford University
Bachelor of Engineering - BE
The University of Queensland
Quarter abroad
ABOUT HÉLOÏSE HOFFMANN
Driven by curiosity, I\'m a Renaissance woman with a primary interest in engineering…
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