Building a TLC Team

Core CMD TLC Team

Carsten G. Bönnemann, MD

Dr. Carsten Bönnemann

Dr. Carsten Bönnemann


Dr. Carsten Bönnemann is a pediatric neurologist specializing in neuromuscular disorders and neurogenetics. He graduated from medical school in Freiburg, Germany. He completed pediatric training in Hamburg and in Goettingen, and training in child neurology at MGH/Harvard Medical School in Boston. His neuromuscular training continued at Children’s Hospital Boston, where he also conducted research in Dr Kunkel’s lab working on gene identification in the muscular dystrophies. In 2002 he joined the Children’s Hospital of Philadelphia/University of Pennsylvania where he was Co-Director of the Neuromuscular Program and Director of the Neurogenetics Clinic. Since 2010 Dr. Bönnemann is a Senior Investigator in the Neurogenetics Branch and Chief of the Neuromuscular and Neurogenetic Disorders of Childhood Section at the National Institute of Neurological Disorders and Stroke/National Institutes of Health. The clinical focus of the section at NIH ranges from the clinical characterization and management of known and new disorders to translational aspects leading to clinical trials. Research in the lab is concerned with the molecular genetics and cell biology of muscular dystrophies and early onset myopathies in order to develop molecular-based treatments. More basic research focuses on the role of the extracellular matrix in muscle maintenance and regeneration. Before his position at the NIH he was at He was a Pew Fellow in the Biomedical Sciences and received the Derek Denny-Brown Neurological Scholar Award from the American Neurological Association.

Anne Rutkowski, MD

Dr. Anne Rutkowski with her daughter, Maia

Dr. Anne Rutkowski with her daughter, Maia


Dr. Anne Rutkowski is Chairman and Co-Founder of Cure CMD. She is a practicing clinician at Kaiser SCPMG and has a 13 year old daughter with CMD. As Chairman, she has led the effort to launch the CMDIR, the CMD BioBank, CMD TLC’s, fund peer-reviewed CMD translational research and worked closely with an international CMD network to publish CMD consensus care guidelines. Per Dr. Rutkowski, “Cure is a long way off. The biggest treatment effect in CMD will come from optimizing, analyzing and standardizing care while building a drug pipeline. This is the TLC commitment to the CMD community”.

Katy Meilleur, PhD

Dr. Katy Meilleur

Dr. Katy Meilleur

Dr. Katy Meilleur received her B.S. from the University of Maryland, her B.S.N. and her M.S.N. from the University of Pennsylvania, and her PhD from the Johns Hopkins University. She did her post doctorate in the Center for Research on Genomics and Global Health at the NIH and has clinical experience as a Neonatal Intensive Care Nurse at the Hospital of the University of Pennsylvania. She currently works as a staff scientist and sees patients as a board certified pediatric nurse practitioner in the Neuromuscular and Neurgenetics of Childhood Section of the NINDS.

Sandra Donkervoort, MS, CGC

Sandra Donkervoort

Sandra Donkervoort


Sandra’s picture and bio coming soon.

Minal S. Jain, PT, DSc, PCS

Dr. Minal Jain

Dr. Minal Jain


Dr. Minal Jain is a senior staff physical therapist in the Rehabilitation Medicine Department at the NIH Clinical Center. She received her undergraduate degree from the University of Evansville and her clinical doctorate from the University of Maryland. She is a physical therapy board certified Pediatric Specialist. Her research interests are in the areas of pediatrics oncology and genetic disorders such as congenital muscular dystrophy. She has written articles and presented lectures, nationally and internationally.

TLC Local Team Participation

We would like to encourage the local site to invite pediatric neurology and neuromuscular colleagues, residents and fellows as well as allied health professionals, such as nurses, nurse practitioners, physical therapists to the clinic day.  For the CMD Conference, a broader audience that includes families, pediatric sub-specialists (cardiologists, orthopedics, pulmonologists) and speech and occupational therapists is desired.  Each TLC will be tailored to the individual site, based upon site goals and expectations.  We encourage local clinicians to present during the CMD Conference to provide the local CMD community with an opportunity to become educated regarding local clinician support.

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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