Our Steering Committee

The MTM and CNM Patient Registry Steering Committee comprises a mixture of clinical and research expertise, as well as representation from patients and patient organisations. Collectively, the committee are responsible for:

  • Reviewing and voting on requests to use registry data (called ‘enquiries’), to ensure they are appropriate, ethically approved, and in-line with registry objectives and remit.
  • Advising on strategic direction, opportunities and priorities for the registry.
  • Providing input and guidance where requested on publications, posters, presentations or other materials.
  • Reviewing reports and proposals for registry projects.
  • Ensuring the registry is well governed and promoting it where appropriate.

If you have any questions about the steering committee please contact the Registry Curator Jo Bullivant.

  • Carsten Bönnemann

    Senior Investigator and Chief of the Neuromuscular and Neurogenetic Disorders of Childhood Section – National Institute of Neurological Disorders and Stroke (NINDS)
    United States of America

  • Ana Buj Bello (Co-Chair)

    Senior Scientist in Neuromuscular Disorders and Gene Therapy – INSERM, Genethon

  • Aart den Hollander

    Patient Representative – ZNM – Zusammen Stark! e.V.

  • James Dowling (Co-Chair)

    Staff Clinician in the Division of Neurology and Senior Scientist in Genetics and Genome Biology – Hospital for Sick Children, Toronto

  • Robert J. Graham

    Senior Associate in Division of Critical Care Medicine, Director of Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program, Associate Professor – Boston Children’s Hospital and Harvard Medical School
    United States of America

  • Heinz Jungbluth

    Consultant in Paediatric Neurology and Senior Lecturer – Guy’s and St Thomas’ NHS Trust and King’s College London
    United Kingdom

  • Anne Lennox

    Chief Executive and Parent Trustee – Myotubular Trust
    United Kingdom

  • Chiara Marini-Bettolo (Principal Investigator)

    Clinical Lead, Consultant Neurologist, and Clinical Lead of the Highly Specialised Service for Limb-girdle muscular dystrophies – John Walton Muscular Dystrophy Research Centre and Newcastle Hospitals NHS Foundation Trust
    United Kingdom

  • Dionne Moat

    Clinical Specialist Neuromuscular Physiotherapist – John Walton Muscular Dystrophy Research Centre at Newcastle University, and Newcastle Upon Tyne Hospitals NHS Foundation Trust
    United Kingdom

  • Ulrike Schara-Schmidt

    Professor for Paediatric Neurology and Neuromuscular Diseases – Children’s Hospital of the University Hospital Essen