Awareness, Advances, Action: Optimizing outcomes for Patients with generalized Myasthenia Gravis

Virginia Commonwealth University

Richmond, VA,
United States

Kelly Gwathmey is originally from Richmond, Virginia. She studied neuroscience and behavioral biology at Emory University in Atlanta, Georgia. She then attended Eastern Virginia Medical School in Norfolk, Virginia. Her neurology and clinical neurophysiology training was completed at the University of Virginia. Following this, she completed a neuromuscular medicine fellowship at both Brigham and Women’s Hospital and Massachusetts General Hospital in Boston, Massachusetts. At the University of Virginia, she started the multidisciplinary MDA clinic, was co-director of the ALS clinic, and was the fellowship director for both the neuromuscular and clinical neurophysiology fellowships. She joined Virginia Commonwealth University in January 2019 and currently serves in the capacity of associate professor of neurology, neuromuscular division chair, neuromuscular medicine program director, and EMG laboratory director. Dr. Gwathmey sees a wide spectrum of neuromuscular patients and performs electrodiagnostic studies (nerve conduction studies and electromyography). Her research interests include quality-of-life instruments and autoimmune neuromuscular disorders.

Disclosures

Speakers Bureau/honoraria for non-CME: Alexion pharmaceuticals, argenx

Consultant/advisory board: Alexion pharmaceuticals, Amgen, argenx, UCB

Beth Israel Deaconess Medical Center / Harvard Medical School

Boston, MA,
United States

Pushpa Narayanaswami is Professor of Clinical Neurology at Harvard Medical School and Vice-Chair of Clinical Operations, Department of Neurology, Beth Israel Deaconess Medical Center, Boston, MA. She is a fellow of the American Academy of Neurology (AAN). She has authored/co-authored several peer-reviewed articles, invited reviews, editorials, clinical practice guidelines, quality measures, book chapters and edited a book, “Principles and Practice of the Muscular Dystrophies”. She has received federal research funding from the Agency for Healthcare Research and Quality (AHRQ), Patient Centered Outcomes Research Institute (PCORI) and National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). She serves as an associate editor for Muscle & Nerve and as the associate editor, classification of evidence, for Neurology® Journals. She co-chairs the Quality Improvement and Patient Safety Committee of the American Association of Neuromuscular and Electrodiagnostic Medicine.

In her clinical practice she manages neuromuscular conditions, with special emphasis on myasthenia gravis, myopathies and muscular dystrophies. Her research includes clinical trials of new treatments for myasthenia gravis and observational studies of the effectiveness of treatments in clinical practice. She is a methodologist for several guidelines in development. Her work seeks to incorporate research with advocacy and healthcare policy to improve patient care.

Disclosures

Grant/research support: Alexion, Cabaletta Bio, Dianthus, NIAMS, PCORI

Consultant/advisory board: Alexion. argenx, Amgen, CVS Healthcare, Dianthus, ImmunAbs, Janssen, Merck-Serono, Roche, UCB

Non-mutual funds stock ownership/stock options: Dr. Reddy’s Laboratories, Moderna, Pfizer

Patent holder/royalties: Springer-Nature book royalty

Other financial or material support:

• Data and safety monitoring board member: argenx, Sanofi, NMD Pharma

• Associate editor: Muscle & Nerve and Neurology® Journals

Oxford Children’s Hospital

Oxford,
United Kingdom

Sithara Ramdas is a Consultant Paediatric Neurologist based at the Oxford Children’s Hospital and an Honorary Senior Clinical Lecturer with the University of Oxford. Her specialist interests are neuromuscular disorders and neuroimmunology. She leads the regional Paediatric Neuromuscular multi-disciplinary service. She is the Paediatric lead for the National Highly Specialised Services for Congenital Myasthenia Syndromes and Neuromyelitis Optica. She leads the Highly Specialised Service for Paediatric Multiple Sclerosis and NHS England Rare Disease Collaborative Network (RDCN) for Juvenile Myasthenia Gravis. She is the principal investigator for several past and current clinical trials and her current areas of research interest are on Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), Congenital and Acquired Myasthenia.

Disclosures

Speakers bureau/honoraria for non-CME: Roche

Consultant/advisory board: Italfarmaco, Pfizer, Roche

Educational grants: Biogen, Novartis, Roche

Rhode Island Hospital

Providence, RI,
United States

Kara Stavros, MD, FAAN completed her undergraduate degree in Neural Science at New York University and attended medical school at the Albert Einstein College of Medicine, followed by an internship in internal medicine at the Beth Israel Medical Center in New York City. She is a graduate of the Mount Sinai Hospital Neurology Residency Program in New York City, where she stayed on to complete a fellowship in Neuromuscular Medicine. She joined the faculty at Rhode Island Hospital and the Warren Alpert Medical School of Brown University in 2015. She currently serves as Director of the Neuromuscular Division, EMG Laboratory, and MDA Clinic at Rhode Island Hospital. She specializes in neuromuscular diseases, neuromuscular ultrasound, and nerve conduction studies and electromyography (EMG). She has a special interest in public policy and advocacy issues related to neurologists and patients with neurologic conditions. Dr. Stavros is an active member of the American Academy of Neurology, American Association of Neuromuscular and Electrodiagnostic Medicine, and the Rhode Island Medical Society.

Disclosures

No financial relationships to disclose.

Myasthenia Specialist Nurse,
Wessex Neurological Centre

Southampton General Hospital, Southampton,
United Kingdom

Jude Kings is a myasthenia gravis specialist nurse at the Wessex Neurological Centre, Southampton General Hospital, Southampton, UK. She has a Bachelor of Science in Adult Nursing from Oxford Brookes University, and has specialised in neurology since 2001. Jude has worked in various clinical settings including in-patient neuro rehabilitation and other specialist nursing roles within the community for stoke and complex neurology patients. She is a non-medical independent prescriber. Alongside her current role as MG Specialist Nurse, she is a member of the global Nurse steering committee for MG, in conjunction with UCB Pharma Ltd, and co-author on a publication on the role of MG Clinical Nurse Specialist role and the use of personal health records in neurology. Ms. Kings has also been involved in the development of elearning training modules for nurses in NM/MG (neurology academy) and have presented at the RCDN Rare Disease Connect in Neurology conferences on the role of MG Specialist nurse and decision making in practice.

Disclosures

Speakers bureau/honoraria for non-CME: argenx Pharma, Neurology Academy, UCB Pharma Ltd

Patient contributor

Meet Betty Ajueyitsi. Betty is Nigerian American and lives in Maryland. She was diagnosed with seronegative MG in 2011 and became an advocate after her journey through the medical system. Professionally, she has been a schoolteacher for more than 35 years. Her immediate family – husband and kids – “are awesome”. Knowing that they are in her life gives her the extraordinary inner peace that makes her feel there is nothing that will stop her from achieving her life goals. She just needs to figure out how to get things done with MG – her “invisible disability”.

Disclosures

Author of, and receiving royalties for, the independently published book “Myasthenia Gravis Trivia.”

Patient contributor

Meet Janel Worcester-Brown. Janel spent her social-work career of over 20 years supporting and advocating for children and families. She was diagnosed with gMG in 2019. Since then, she has pivoted her advocacy passion to supporting patients living with chronic illness. She enjoys spending time with her understanding husband and is unbelievably proud of her two adult children. Janel is enthusiastic about being creative with textiles and painting, gardening …and on a good day, cooking. Her favorite place to be is in the peaceful Maine woods.

Disclosures

No financial relationships to disclose.

Patient contributor

Meet Jodi Dudas. Jodi is an RN with 13 years of experience in the nursing field. As an RN patient care leader at BayCare Health Systems, she specializes in neurology and is known for her advocacy for patients with MG. Jodi has a master’s degree in nursing and is a member of the American Association of Neuroscience Nurses (AANN). Passionate about MG because of her first-hand experience, Jodi is an active member in the MG support group based in St. Petersburg Florida. She also participates yearly in the Myasthenia Gravis Foundation of America’s MG Walk to help raise funds towards finding a cure for MG. When not working at the hospital, she enjoys paddleboarding, traveling, and spending time with her husband and 6-month-old son.

Disclosures

No financial relationships to disclose.

Patient contributor

Meet Caroline Ann Budzinski. Caroline has devoted her career to the helping professions: 20 years supporting vulnerable populations in both front line and executive roles, teaching on the faculty of Social Service Work at one of her alma maters, and sitting on the board of directors for the oldest children’s charity in Ottawa, Ontario, Canada. Caroline and her spouse, Jason (PharmD), have two amazing children. Their eldest, Daphne, was diagnosed with MG when she was 10 years old. In the 3 years since, Caroline and Daphne have learned, cried, and celebrated together as Daphne navigates this life-changing diagnosis.

Disclosures

No financial relationships to disclose.