MDA Legacy Award

MDA Legacy Award for Achievement in Clinical Research

The MDA Legacy Award for Achievement in Clinical Research recognizes individuals whose contributions have had a lasting impact on advancing research and improving care for people living with neuromuscular conditions. Recipients of this award demonstrate exceptional leadership, commitment to scientific progress, and dedication to patient-centered care. Their work not only expands knowledge but also inspires future generations of clinicians and researchers to continue building a stronger path forward.

We are proud to recognize individuals with this award, which reflects MDA’s mission to transform the lives of those we serve.

2025

Katherine Mathews, MD

Professor of Pediatrics and Neurology at the University of Iowa’s Roy J. and Lucille A. Carver College of Medicine

Dr. Mathews was bestowed the Legacy Award because of his considerable contributions to the field of neuromuscular disease research, including:

  • Pioneering research in neurogenetic diseases, with a particular focus on conditions affecting children.
  • Completion of a fellowship in genetics following your training in pediatrics and child neurology, reflecting your deep commitment to specialized care and research.
  • Early groundbreaking work in genetic mapping of facioscapulohumeral dystrophy (FSHD).
  • Leadership in clinical research, including participation in multicenter natural history studies for Duchenne muscular dystrophy and Friedreich ataxia.
  • Direction of an ongoing natural history and outcome measure study on dystroglycanopathies at the Iowa Wellstone Muscular Dystrophy Specialized Research Center.
  • Co-PI leadership in the Education Core of the Iowa Wellstone Center, mentoring medical students and fostering the development of the next generation of clinical investigators.
  • Longstanding contributions to the Iowa MDSTARnet site, actively supporting the growth of this CDC-sponsored epidemiologic study since 2005.
  • Service as site PI for numerous industry-sponsored clinical trials, advancing therapies for various neuromuscular diseases.
  • A steadfast commitment to patient care, providing compassionate and expert care to individuals with all types of neuromuscular diseases.
  • An overarching dedication to improving care and outcomes for children and adults with neuromuscular diseases.

2024

Jeffrey Chamberlain, PhD

Neurology, Biochemistry, Medicine/Medical Genetics McCaw Chair in Muscular Dystrophy and Professor

Institute for Stem Cell & Regenerative Medicine at the University of Washington

Dr. Chamberlain was bestowed the Legacy Award because of his considerable contributions to the field of neuromuscular disease research, including:

  • Co-discovering the technique of multi-plex PCR
  • Confirming that over-expression of dystrophin in the mdx mouse can correct the phenotype
  • Collaborating on the identification of the first muscle-specific promoters
  • Pioneering the development and delivery of a truncated but functional micro-dystrophin gene based on extensive understanding of the structure/function relationship of the protein
  • Development of extensive assays to measure muscle contractile properties, morphology and physiology
  • Continuing work to better understand immune responses to dystrophin and to restore a full-length dystrophin protein
  • Leadership roles including PI of an NIH Wellstone Center grant, in-coming President of the Association for Cell and Gene Therapy, recipient of the McCaw Endowed Chair and long-serving past member of the Muscular Dystrophy Association’s Scientific Advisory Committee

2023

Merit Cudkowicz, MD, MSC

Director of the Sean M. Healey & AMG Center for ALS

Chief of Neurology at Mass General Hospital

Director of the Julieanne Dorn Professor of Neurology at Harvard Medical School

Dr. Cudkowicz was bestowed the Legacy Award because of his considerable contributions to the field of neuromuscular disease research, including:

  • Co-founding and expanding the Northeast ALS Consortium (NEALS)
  • Pivotal role in testing of antisense oligonucleotides for SOD1 ALS
  • Serving as principal investigator of the NeuroNEXT Clinical Coordinating Center at MGH
  • Development and launch of the HEALEY ALS Platform Trial
  • Ongoing dedication to people living with ALS and their families

2022

Carsten G. Bönnemann, MD

Senior Investigator

Neuromuscular and Neurogenetic Disorders of Childhood Section

National Institute of Neurological Disorders and Stroke

Dr. Bönnemann was bestowed the Legacy Award because of his considerable contributions to the field of neuromuscular disease research, including:

  • Identifying genetic causes of limb girdle muscular dystrophies (LGMDs)
  • Elucidating molecular pathways and developing preclinical models for congenital muscular dystrophies such as Bethlem myopathy
  • Using genomic technologies to discover new disease-causing genes in children with complex neuromuscular conditions
  • Establishing natural history and outcome measures for use in clinical trials for congenital myopathies
  • Conducting the first gene therapy trial for giant axonal neuropathy in humans