June is Myasthenia Gravis Awareness Month

About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Muscular Dystrophy Association Names Sharon Hesterlee, Ph.D., Executive Vice President, Chief Research Officer

An experienced drug development executive focused on neuromuscular disease, neuroscientist Dr. Hesterlee brings a unique background in the pharma, biotech and nonprofit sectors

NEW YORK, Dec. 9, 2019 /PRNewswire/ -- The Muscular Dystrophy Association (MDA) announced today the appointment of Sharon Hesterlee, Ph.D., as executive vice president, chief research officer.

Dr. Hesterlee is an experienced drug development executive focused on neuromuscular disease, with a unique, 20-year background in the pharma, biotechnology and nonprofit sectors. Earlier in her career, she held several leadership positions spanning more than ten years with MDA's research and venture philanthropy teams.

Muscular Dystrophy Association Names Sharon Hesterlee, Ph.D., Executive Vice President, Chief Research Officer
Muscular Dystrophy Association Names Sharon Hesterlee, Ph.D., Executive Vice President, Chief Research Officer

She has served as project lead for industry gene therapy programs in Friedreich's Ataxia Giant axonal neuropathy, limb-girdle muscular dystrophy 21 and myotonic dystrophy type I (program stages from discovery through single pivotal clinical trials).   

In her new role, she will spearhead innovations in research and science by delivering strategic and operational leadership of MDA's discovery, translational and clinical research portfolio.

"With 20 years of diverse experience in the rare disease space, including demonstrated leadership abilities in heading large programs and cross-functional teams, there are few people who would be equally suited to lead MDA's research initiatives than Dr. Hesterlee," said MDA President and CEO Lynn O'Connor Vos. "Her combination of discipline-specific knowledge, business development acumen and experience with fostering meaningful interactions between patient advocacy groups and the industry will be key in rejuvenating signature MDA programs, while bringing strategic focus to our grants portfolio to drive research across all stages of the drug development pipeline."

Reporting directly to Ms. Vos, Dr. Hesterlee will provide scientific leadership for MDA through engagement with federal agencies, international neuromuscular disease partners, drug development groups, pharmaceutical companies and more. She will manage MDA's scientific program to provide greater efficiencies for applicants, reviewers and staff, as well as serve as the organization's spokesperson on scientific matters.

"Rejoining MDA at this pivotal time is a tremendous opportunity, as years of research are turning into meaningful therapies for families," said Dr. Hesterlee. "With resources like MOVR -- our unique data hub, which enables researchers and clinicians to share clinical, genomic and patient-reported information -- as well as the clinical research networks and MDA Care Centers, MDA is uniquely positioned to lead the field of neuromuscular research into the genomic era."

Prior to rejoining MDA, Dr. Hesterlee served as the Executive Vice President for Portfolio Development and head of neuromuscular programs at leading adeno-associated virus (AAV) gene therapy company Asklepios Biopharmaceuticals, Inc. (Askbio). She previously led Lion Therapeutics as CEO of this neuromuscular-focused special purpose entity of Askbio before Lion was rolled back into Askbio as part of its successful series A funding.

Before joining Askbio/Lion she served as Director, Gene Therapy at Pfizer Inc.'s Rare Disease Research Unit, where she led three of Pfizer's internal gene therapy programs following the acquisition of Bamboo Therapeutics in 2016.

In the 15 years before transitioning to industry-focused roles, Dr. Hesterlee led research and strategy for several leading nonprofit organizations, having served as Chief Science Officer for the Myotonic Dystrophy Foundation, Vice President of Research for Parent Project Muscular Dystrophy and Scientific Director of the Association for Frontotemporal Degeneration. 

During her initial work with MDA, she served as Senior Vice President and Executive Director of MDA Venture Philanthropy and Vice President for Translational Research, among other positions.

Dr. Hesterlee has served on the advisory board of the University of Arizona's School of Mind, Brain and Behavior, the governing board of the Health Research Alliance, the NINDS Council and the Department of Health and Human Service's Muscular Dystrophy Coordinating Committee. She currently serves on the Advisory Board for the Oro Valley Innovation Labs (OVIL) in Tucson, where she resides.

She earned her Ph.D. in neuroscience from the University of Arizona. She graduated from the University of Georgia with both a B.S. (cum laude) and B.F.A.  She completed a Drug Industry Association fellowship in drug development, and has received certificates from the University of Arizona, BIO, American Society of Gene & Cell Therapy and Woods Hole Marine Biological Laboratory in various scientific and business-related topics. Dr. Hesterlee is lead or co-author of peer-reviewed papers published in leading scientific and medical journals, including New England Journal of Medicine, Nature and PLoS One.

Dr. Hesterlee is a member of the American Society for Gene and Cell Therapy.

About the Muscular Dystrophy Association

MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best in class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. For more information visit mda.org.

SOURCE: Muscular Dystrophy Association