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Clinical Trials
A quick look at investigational drug studies.
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Book: Dan And DMD
This book will help parents and guardians as they prepare to talk to their children about Duchenne.
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Our Insurance Flight Plan
Our Health Insurance Flight Plan breaks down options that may be available to you.
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Resource Library
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About Female Carriers
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Camp Promise
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Community Webinars
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Join Jett Foundation’s Community Webinar Series to hear from the team at Solid Biosciences on the INSPIRE DUCHENNE clinical trial for SGT-003, a next-generation microdystrophin gene therapy for individuals living with Duchenne muscular dystrophy. Included in the update will be details about the current progress in the study and efforts underway to expand eligibility criteria and participating clinical trial sites.
INSPIRE DUCHENNE Updates
Thursday, November 21, 2024
1pm ET | 12pm CT | 11am MT | 10am PT
Annie Ganot, Vice President, Patient Advocacy, is the Co-Founder and Head of Patient Advocacy at Solid Biosciences, a pioneering precision medicines company dedicated to advancing treatments for rare neuromuscular and cardiac conditions. Inspired by her son’s diagnosis of Duchenne muscular dystrophy, Annie’s personal journey fuels her unwavering commitment to improving the quality of life for patients through patient-centered drug development and close collaboration with patient communities, policymakers, and regulators. Before founding Solid Biosciences, she had a successful career in the investment banking industry at Lehman Brothers, Deutsche Bank, and Morgan Stanley in New York and London.
Patrick Gonzalez, Ph.D., Senior Director of Clinical Science at Solid Biosciences, is a muscle biologist by training, primarily having focused on characterizing the molecular biology and physiology associated with skeletal and cardiac muscle pathology in Duchenne muscular dystrophy. Since joining Solid in 2016 he has led non-clinical pharmacology, translational, and clinical development efforts, collaborating closely with academic research, clinical, and industry partners. He holds a Ph.D. in Cell Biology and Molecular Medicine from Rutgers University, and a Bachelor of Science in Biochemistry from Syracuse University.
Matthew Harmelink, M.D., Medical Director and Therapeutic Head, Neuromuscular joined Solid Biosciences in July 2024 and oversees the development of Solid’s clinical programs for rare neuromuscular diseases, including Duchenne muscular dystrophy. Previously Dr. Harmelink was Associate Professor and Vice Chair of Fiscal Affairs and Clinical Operations for the Department of Neurology as well as Section Chief and Medical Director of Child Neurology at the Medical College of Wisconsin/Children’s Wisconsin. Additionally, he was the Director of the Pediatric Neuromuscular Program and Co-Director of the Neurogenetics Program. Dr. Harmelink was site principal investigator for gene therapy clinical trials in Duchenne as well as other sponsored research in Spinal Muscular Atrophy and Myotonic Dystrophy.
Dr. Harmelink received a B.S. in Biology from University of Wisconsin-Madison and a Doctor of Medicine from the Medical College of Wisconsin. He completed training in Pediatrics at University of California-Irvine, Fellowship in Child Neurology at the Medical College of Wisconsin and Neuromuscular Medicine Fellowship at University of California-Los Angeles.
Our Community Webinar Series is focused on ensuring that our Duchenne and rare disease community is better prepared for those unexpected moments, challenging medical decisions, and difficult stages when on a Duchenne journey.
No one ever expects Duchenne and there is no correct way to tackle a diagnosis, but we can always better prepare. This webinar series is an opportunity to equip yourself with more knowledge, resources, and tools for those real-life, often unanticipated, scenarios.
Jett Foundation, Inc.
65 Cordage Park Circle
Suite 130 | Plymouth, MA 02360
781-585-5566 | [email protected]
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Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!
Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.