About Us

GLARING UNMET NEEDS
Because LGMD2A is less prevalent and the clinical course, in many cases, is less severe than other forms of muscular dystrophy, it attracts significantly fewer research dollars and thus fewer researchers are working to understand the disease and discover a cure. Prior to the founding of C3:

• the biology of LGMD2A was and still is not completely understood and there is no cure or treatment
• there had never been a workshop held specifically for LGMD2A researchers.
• there was and is little awareness of LGMD2A among the general public

THE PLAN OF ACTION
Coalition to Cure Calpain 3 (C3) was founded in 2010 for the specific purpose of funding research efforts focused on understanding the biology of and finding a cure for LGMD2A. This organization was created by people with LGMD2A for people with LGMD2A as both founders have this progressive disease. We are motivated by our desire to encourage collaboration among scientists, those who have LGMD2A, their families, friends and the community-at-large to bring an end to this under-researched, underfunded “orphan” disease.

THE TEAM

SCIENTIFIC DIRECTOR

Jennifer R. Levy, PhD

Dr. Levy comes to C3 from Dr. Kevin Campbell’s laboratory at the Howard Hughes Medical Institute and the University of Iowa where she performed postdoctoral research on the roles of the ubiquitous calpains in skeletal muscle function. She has co-authored multiple peer-reviewed manuscripts, and her research has been supported by grants from the National Institutes of Health and a development grant from the Muscular Dystrophy Association. In addition, she served as the Clinical/ Translational Research Laboratory Liaison for the University of Iowa’s Wellstone Muscular Dystrophy Center where she facilitated communication among clinicians and researchers in the Center and led tours and educated muscular dystrophy patients and their families during their visits to the Center. Dr. Levy earned her PhD in Cell and Molecular Biology at the University of Pennsylvania and her BS in Molecular and Cell Biology from the University of Connecticut. As C3’s Scientific Director, Dr. Levy will facilitate research into finding treatments for LGMD2A/R1 by managing our grant program and by interacting with international experts in muscular dystrophy research, including those in academia, bio-pharmaceutical companies, government, and peer organizations.

BOARD OF DIRECTORS

Jordan Boslego, President

• Founder of C3 patient registry
• PhD candidate at Boston University, Questrom School of Business
• A.B. in Economics and Statistics from Harvard College, cum laude with High Honors
• Professional experience in financial services
• Diagnosed with LGMD2A/R1 in 2005

Michele Wrubel, Senior Vice-President/Secretary

• Co-founder of Coalition to Cure Calpain 3 in 2010
• More than two decades of non-profit experience in leadership positions; formerly a media supervisor at Ammirati & Puris/Lintas
• B.S. from University of Rhode Island, summa cum laude
• Diagnosed with muscular dystrophy in 1989 and LGMD2A/R1 in 2007

Lee Wrubel, MD, Treasurer

• Consultant at Egon Zehnder in New York, where he focuses on leadership issues for healthcare companies
• Co-founder and General Partner of Foundation Medical Partners
• Previously an investment professional specializing in biotechnology and medical device investments with Canaan Partners and Highland Capital Partners
• A.B. from Lafayette College, MD and MPH from Tufts University, MBA from Columbia University

Demosthenes Madureira de Pinho Neto, Director

• CEO of Brazil Warrant (a holding company with interests in Banking, Mining and Agriculture) and Member of the Board of Directors of Itau Unibanco and CBMM
• Over 25 years of experience in the financial sector as a consultant and executive
• Former Director of the Central Bank of Brazil
• CEO of Dresdner Asset Management (1999-2002)
• Executive director of Unibanco and Unibanco Asset Management (1994-1997)
• CEO of Unibanco Asset Management (2004-2008)
• CEO of Itau-Unibanco Asset Management (2008-2011)
• B.A. and M.S. in Economics from Catholic University of Rio de Janeiro; M.A. and Ph.D. in Economics from University of California, Berkeley

Alberto Nobrega, PhD, Director

• Authored over 60 scientific papers in the area of B cell biology with a focus on natural antibodies
• Professor of Immunology, Federal University of Rio de Janeiro
• Postdoctoral research at the Institute Pasteur, Paris
• B.S. and M.S. in Mathematics from PUC-RJ University of Rio de Janeiro; Ph.D. in Immunology from the Federal University of Rio de Janeiro

Carol Abraham, Director

• Founder of LGMD Awareness Day and LGMD Awareness Foundation, Inc.
• Co-Chairperson for National Limb Girdle Muscular Dystrophy Conference
• B.S. from Mount Mary University
• Former Registered Occupational Therapist
• Diagnosed with LGMD2A/R1

SCIENTIFIC ADVISORY BOARD

Dr. Melissa Spencer, PhD, Chair

• Professor of Neurology at University of California, Los Angeles
• Co-Director of the Center for Duchenne Muscular Dystrophy at UCLA
• Recipient of PECASE, the nation’s highest honor for professionals at the outset of independent research careers (2001)
• Has spent the past two decades studying calpain 3 and LGMD2A

Dr. Kevin Campbell, PhD

• Roy J. Carver Biomedical Research Chair in Molecular Physiology and Biophysics, University of Iowa
• Investigator with the Howard Hughes Medical Institute
• Director of the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center and internationally recognized for fundamental contributions to muscular dystrophy research
• March of Dimes Prize in Developmental Biology for pioneering research on cell mechanisms involved in MD (2009)

Dr. Eric Hoffman, PhD

• Professor of Pharmaceutical Sciences and Associate Dean for Research, Binghamton University
• President and CEO, ReveraGen BioPharma
• Over 400 publications; laboratory increasingly focused on novel drug development programs
• Emphasis on gene identification, pathophysiological studies, molecular diagnostics and therapeutics

Dr. Louis Kunkel, PhD

• Universally recognized for the identification of the gene and encoded protein dystrophin (which is mutated in boys with Duchenne/Becker MD)
• Chair, Scientific Advisory Committee, MDA
• Professor of Pediatrics and Genetics, Harvard Medical School, Boston
• Director of the Sequencing/Genotyping, Expression Array and FACS Sorting Core Facilities at Children’s Hospital Boston
• Authored over 213 journal articles and 20 book chapters Recipient of 22 awards and honors for scientific leadership and achievement; most recently was awarded the March of Dimes Prize in Developmental Biology

Dr. Volker Straub, MD, PhD

• Director of the John Walton Muscular Dystrophy Research Centre and Deputy Dean for Newcastle University’s Translational and Clinical Research Institute
• Consultant in Neuromuscular Genetics and Paediatrics, and an NIHR Senior Investigator
• Long-standing interest in the pathogenesis of genetic muscle diseases, with research involving disease models, the application of imaging technologies, next generation sequencing, and machine learning
• Chief/Principal Investigator for several natural history studies and interventional clinical trials in rare neuromuscular disorders
• Current president of the World Muscle Society and an author on over 450 peer-reviewed publications