Member Details
Organization: CureLGMD2i Foundation
Title: Co-Founder/CEO
About Me:
Kelly Brazzo is the co-founder and CEO of the CureLGMD2i Foundation, established in 2011, after her daughter, Samantha, was diagnosed with Limb Girdle Muscular Dystrophy (LGMD) 2I/R9. Kelly’s passion is advocating, spreading awareness, and promoting research and drug development for LGMD2I/R9, an ultra rare and progressive muscle wasting disease. She collaborates with fellow patient advocacy groups, industry partners and other stakeholders to accelerate an approved therapy for LGMD2I/R9. Kelly actively serves on the the the following committees: Global FKRP Registry, University of Iowa Wellstone Conference, LGMD Awareness Day, International LGMD Conference, NORD Policy and Advocacy Task Force, MDA Neuromuscular Advocacy Collaborative, Every Life Foundation Community Congress, Critical Path Institute LGMD Task Force, Pediatric Inclusion Alliance, Save Rare Treatments Task Force, and Treat NMD TACT Team. She was a key leader in achieving an ICD-10 code for LGMD2I/R9 as well as planning the LGMD Patient Listening Session, EL-PFDD and Scientific Workshop, LGMD Day on the Hill and the European LGMD2I/R9 Patient Conference. Kelly is dedicated to relentlessly pursuing an approved treatment for cure for LGMD2I/R9.
Interests:
- board_management
- events
- fundraising
- grant_writing
- industry_engagement
- medical_edu
- networking
- registries
- research
- policy
- volunteers