Team

Jennifer Levy is the Scientific Director at Coalition to Cure Calpain 3 (C3), where she spearheads the organization’s mission to develop effective treatments for calpainopathies (limb-girdle muscular dystrophy types 2A/R1 & D4) by overseeing the research grant program. Managing a diverse research portfolio spanning discovery through trial readiness, she has directed over $3 million in funding toward high-impact projects. Dr. Levy is the principal investigator of the LGMD2A/Calpainopathy Registry, an essential data initiative leveraging the insights of 400+ participants to better understand the patient experience. Additionally, she collaborates with key leaders in academia, industry, government, and nonprofit organizations to drive progress towards shared goals. Dr. Levy earned her PhD from the University of Pennsylvania and completed her postdoctoral fellowship in Kevin Campbell’s laboratory at the Howard Hughes Medical Institute and the University of Iowa. She co-authored multiple peer-reviewed manuscripts, and her research was supported by an NIH training grant and a Muscular Dystrophy Association development grant.

Jordan Boslego has served as President of C3 since its founding in 2010. He was diagnosed with LGMD2A/R1 in 2005 and subsequently founded the C3 Patient Registry. Jordan holds an undergraduate degree from Harvard College and a graduate degree from Boston University, and has had a finance career spanning investment banking, asset management and hedge funds. He currently resides in Miami, Florida.   

Michele Wrubel’s decades-long diagnostic journey came to an end in 2009 with a genetic confirmation of limb-girdle muscular dystrophy type 2A (LGMD2A/R1). She naturally scoured the internet, learning that the cause of her waddling gait and progressive muscle weakness was the result of mutations in the CAPN3 gene (also referred to as calpain 3). It quickly became clear that this rare disease garnered significantly fewer research dollars than other forms of muscular dystrophy and seemed to have little awareness among the general public. Michele turned her feelings of frustration and devastation into a motivation to make a difference for everyone impacted by this condition. She and her husband Dr. Lee Wrubel committed to starting a non-profit organization to drive research toward a treatment or cure and to educate the global community about calpainopathy. Coalition to Cure Calpain 3 (C3) was founded a year later in 2010.

As Advocacy Chair for C3, Melina Garza leads advocacy efforts that advance awareness, research, and policy initiatives for individuals and families affected by calpainopathy (LGMD2A/R1 and LGMDD4). Inspired by her daughter Brooklyn’s diagnosis with LGMD2A/R1, Melina has become a passionate voice for the rare disease community, working to ensure patients and caregivers have a seat at the table where important decisions are made. She has represented the calpainopathy community through the Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting with the FDA, the LGMD2A/R1 Standards of Care Workshop, LGMD Day on the Hill, congressional meetings, and national advocacy initiatives focused on accelerating research and improving access to care. Melina collaborates with researchers, industry partners, policymakers, and patient organizations to champion policies that support rare disease research and therapeutic development. She is committed to empowering families, amplifying the patient voice, and helping move the calpainopathy community closer to meaningful treatments and ultimately, a cure.

Demosthenes Madureira de Pinho Neto holds a bachelor’s degree and a master’s degree in economics from the Catholic University of Rio de Janeiro, and a Ph.D. from the University of California at Berkeley. He has over 35 years of experience in the financial sector, with significant experience across the public, private, and academic spheres. In the public sector, he served as General Coordinator of Monetary and Financial Policy at the Ministry of Finance and as Director of the Central Bank of Brazil, under Fernando Henrique Cardoso’s tenure. In the private sector, he was CEO of Dresdner Asset Management, Executive Vice President of Unibanco, and CEO of Unibanco Asset Management; and later, following the merger with Itaú, he led Itaú-Unibanco Asset Management. He was CEO of BWGI from 2012 to early 2022 and is currently CEO of BWSA. He is also active in boards and governance, having served as a member of the Board of Directors of Itaú-Unibanco, President of ANBIMA’s Self-Regulation Board, and a member of the Board of Directors of CBMM. He is also part of the Finance Committee of Milestones, the family office of WEG’s controlling shareholders.

Alberto Nobrega holds a bachelor’s degree and a master’s degree in Mathematics from the Catholic University of Rio de Janeiro, as well as a PhD in Immunology from the Federal University of Rio de Janeiro. He conducted postdoctoral research at the Institute Pasteur, Paris, and is currently an assistant professor in the Department of Immunology at the Federal University of Rio de Janeiro. Professor Nobrega has authored over 60 scientific papers in the area of B cell biology with a focus on natural antibodies. He was elected to the Coalition to Cure Calpain 3 Board of Directors after joining us at the 202nd ENMC International Workshop “Clinical Characteristics, Pathomechanisms and Trial Design for Calpainopathy (LGMD2A)” in Naarden, The Netherlands.

Carol Abraham is a retired registered occupational therapist, LGMD advocate, and founder and president of the LGMD Awareness Foundation. Living with LGMD2A/R1 herself, Carol brings both professional expertise and lived experience to her work advancing awareness, education, research, and support for the LGMD community. She founded LGMD Awareness Day, observed annually on September 30, to give people living with limb-girdle muscular dystrophy a stronger collective voice and to increase understanding of this rare disease. Through the LGMD Awareness Foundation, she works to connect patients, families, clinicians, researchers, industry partners, and advocacy organizations to accelerate progress toward better care and, ultimately, treatments and cures. With a passion for empowering people with LGMD to live their best lives, Carol is committed to turning awareness into action and building a stronger, more connected global LGMD community.