IamGSD’s Scientific Advisory Board (SAB):
Offers advice upon request in regard to the quality and relevance of the medical and scientific information we provide for patients and professionals.
Answers our questions about the conditions we cover.
Provides guidance and direction on any medical and scientific issues.
Strengthens our relationships with people and organizations who can champion our cause.
Consults on our support for research.
Our SAB is chaired by main board member Dr. Jared Schreiner.
Prof. Ros Quinlivan
Consultant in Neuromuscular Disease
Ros Quinlivan obtained a BSc in psychology before going on to study medicine at UCL. Her post-graduate training was in paediatrics at London teaching hospitals.
She was the first clinical research fellow in neuromuscular disease at Guy's Hospital, working across paediatric and adult specialties. She was awarded an MD by the University of London for her research into the cardiomyopathy of Duchenne and Becker Muscular Dystrophy.
She was appointed a consultant in 1995 in the West Midlands, where she was Director of the Wolfson Centre for Inherited Neuromuscular Disease.
She moved to UCLH in 2010, where she is clinical lead for the nationally commissioned service for McArdle disease and related disorders.
Ros Quinlivan is also joint co-ordinating editor for the Cochrane Neuromuscular Disease Group.
Dr. Salman Bhai
Consultant in Neuromuscular Disorders
Salman Bhai is an Assistant Professor in the Department of Neurology at UT Southwestern Medical Center and the Director of the Neuromuscular Center in the Institute of Exercise and Environmental Medicine at Texas Health Presbyterian Hospital Dallas. He specializes in neuromuscular disorders, particularly muscle disorders.
Dr. Bhai earned his medical degree at Harvard University. He completed a residency in neurology at Brigham and Women’s Hospital and Massachusetts General Hospital, where he also received advanced training through a fellowship in neuromuscular medicine and earned a medical education certificate.
Dr. Bhai’s clinical interests include the evaluation, diagnosis, and treatment of neuromuscular disorders. He focuses on patients with inflammatory and metabolic myopathies as well as those with immune checkpoint inhibitor complications.
The goal of his research is to better understand, diagnose, and treat patients with myositis through exercise and muscle physiology studies as well as through clinical trials.
Dr. Richard Godfrey
Richard Godfrey is a Senior Lecturer in Sports Coaching and Human Performance at Brunel University. His PhD was on growth hormone response and its association with lactate, which introduced him to McArdle Disease.
His interests are sports performance and health-related aspects of exercise. He has published on: heat; hydration; jet lag; bone health; physiology of rowing, altitude, exercise training and triathlon; detraining; sleep and immune function.
Richard joined Brunel’s College of Health and Life Sciences after 12 years at the British Olympic Medical Centre where he was Chief Physiologist.
His involvement with McArdle Disease grew in 2011 when he joined the bi-weekly McArdle clinics at the MRC Centre for Neuromuscular Disease. He supervises exercise assessments, undertakes studies and is the lead on the research programme.
Richard was made a Fellow of the British Association of Sport and Exercise Sciences (BASES) in September 2010.
TERMS OF REFERENCE
The purpose of the Scientific Advisory Board (SAB) is to offer advice on scientific and medical matters when called upon by the IamGSD Board of Trustees.
The SAB’s activities are to be exclusively scientific and educational, including but not limited to:
Recognizing the values and mission of IamGSD.
When called upon, reviewing any materials containing scientific information to be made available to members and the public, including scientific information disseminated online and in print.
Contributing to the identification of external funding sources including, but not limited to, grants and sponsorships.
Advising on the scientific merit, originality, and contribution to the area of muscle GSD of any research projects seeking funding.
Assisting in the identification of new areas of scientific research about muscle GSD.
Attending in-person or telephone conference call meetings to discuss updates and goals for the upcoming year (minimum once per year).
Providing recommendations for grants, events, and research in the best interest of the organization and muscle GSD patients.
The SAB must adhere to the following:
The SAB will be comprised of no less than three members.
The Chairman of the SAB shall be appointed by the IamGSD Board.
Each SAB member shall be appointed by the IamGSD Board for a three-year term of office (fiscal year January – December), with possible reappointment following the end of their term for another term, capped at three consecutive terms.
Approval by the IamGSD Board for any activities performed by the SAB on behalf of the organization, prior to public dissemination.
Actions performed should be in the best interest of the organization and cannot personally profit any member(s) involved in the review and approval of the activity.
4: CONFLICT OF INTEREST POLICY
No member of the IamGSD SAB shall derive any personal profit or gain, directly or indirectly, by reason of his or her participation on the SAB. Each individual shall disclose to IamGSD any personal or financial interest which he or she may have in any matter pending before IamGSD, and shall refrain from participation in any discussion and decision on such matter.
7 May 2019