Project Mercury - The Global Initiative to Speed the Delivery of Therapies for FSHD

The Global Initiative to Speed the Delivery of Therapies for FSHD

The Global Initiative to Speed the Delivery of Therapies for FSHD

Global Task Force

Oversight of Project Mercury is facilitated by the Global Task Force.  It is governed by representatives from FSHD World Alliance advocacy groups. Other Global Task Force members include biopharma companies, clinicians and various experts from countries around the world. 

All members of the Global Task Force agree to the Project Mercury Global Task Force Member Charter, available here – Project Mercury Global Task Force Member Charter_29 April 2023

Currently serving are (in alphabetical order; a ‘*’ symbol indicates this is a voting member):

Amanda joined the FSHD Society in July 2022 after having been involved as a volunteer Chapter Director, writer, and fundraiser for over four years. As the Society’s Director of Research and Patient Engagement, Amanda brings deep professional expertise in biomedical research, including in clinical studies and clinical trials administration, scientific engagement and communication, and project management. Prior to joining the FSHD Society, she worked at the University of Colorado Anschutz Medical Campus for 12 years in the fields of cancer and Down syndrome as a research scientist, development manager, and program director. In 2016, Amanda’s husband was diagnosed with FSHD, spurring her personal and now professional drive to serve and empower the FSHD community and advance research towards treatments and a cure. Amanda earned her BA in Molecular Biology from Scripps College in Claremont, CA, and her MBA in Bioinnovation and Entrepreneurship from the University of Colorado Denver in Denver, CO. 

Andrew Graham*

FSHD UK - United Kingdom

Andrew has been a leader in FSHD advocacy for several years, originally being Vice President of MD UK and in 2010 became a Board Trustee and Treasurer. In leading a fundraising initiative on FSH, Andrew recognised the importance of patient registries as part of the preparation for clinical trials and was instrumental in establishing the UK FSHD registry at the University of Newcastle Upon Tyne.  Andrew is a also patient representative in FSHD UK.

David became CEO of TREAT-NMD services ltd  on the 1st of November 2021. His aim is to support the growth and effectiveness of the TREAT-NMD Global Membership Alliance through the further development and management of systems and processes, strategic and operational management, contracting, secretarial functions and the management of TREAT-NMD finances. David has developed significant breadth and depth of experience at CEO, Chair and Executive Board level, gained principally in the Healthcare and Life Sciences sector.  He has successfully grown businesses and delivered step changes, particularly in complex and highly regulated health care environments,  through strategy development and implementation, customer centricity, staff engagement, commercial leadership and use of strategic collaborations both locally and internationally.

Emma is the purpose driven Managing Director of FSHD Global Research, Ltd in Australia. After her diagnosis of FSHD in her early 30’s, Emma quickly formed connections to FSHD Global and within the FSHD community. She became a strong advocate for FSHD, Muscular Dystrophy and access and inclusion for people with disabilities. Emma joined the FSHD Global board in 2021 as Executive Director and has been working to revolutionise Australian diagnostics and build clinical trial readiness.

Fabio is one of the founders of ABRAFEU – Brazilian Association of FSHD, and a father working to help his son and all Brazilians who have facioscapulohumeral muscular dystrophy. Formed in 2019, ABRAFEU has an ambitious goal of bringing FSHD treatment to Brazil by 2025.  Fabio has over 26 years of experience in business strategy, building long-lasting relationships in the B2B market in national and multinational consumer goods and service companies, leading and creating multidisciplinary teams in several regions.

Josie is Director at JG Zebra Consulting and has worked in rare diseases and innovative therapies for over 12 years. She currently runs a consultancy business specialising in strategic market access, policy, and stakeholder engagement. She is the Strategic Director for Duchenne UK’s Project HERCULES, an award-winning global collaboration which has developed evidence and tools to support access for new treatments for Duchenne Muscular Dystrophy. Josie is also co-founder and joint CEO of Realise Advocacy, which supports patient involvement in drug development and access processes. She previously led work at NICE to establish the Highly Specialised Technologies programme and has held roles in the pharmaceutical industry, government and on the board of patient organisations.

June is the Senior Director of Research and Education at the FSHD Society and served as its Executive Director from 2012 to 2017. June has worked closely with a variety of foundations to develop initiatives for multiple sclerosis, schizophrenia, amyotrophic lateral sclerosis, Parkinson’s disease, and other disorders. June served on the National Board of the BrightFocus Foundation. June graduated from Harvard College, where she concentrated in physics, and began her career as a science journalist, working as a writer and editor for Scientific American, Science, The New York Times Magazine, and many other national publications.

Ken is Chief Business Officer for the FSHD Society and leads their business development and strategic business partnerships around the world (and fills this same role in support of Project Mercury).  Ken has held senior leadership roles in research-focused advocacy organizations and other private industries for more than thirty years. His consulting work with rare disease biopharma companies in their engagement with research-focused advocacy organisations has led to the acceleration of treatments to patients in a number of disease areas with previously unmet medical needs.  As a business owner and entrepreneur, he has architected digital and mobile health information-technology applications designed to improve patient education and participation in clinical research and clinician-patient interaction at point of care.

Kees discovered his deeper purpose in life in 2006: Developing a cure for FSHD. He retired early from Unilever to dedicate the rest of his life to reach this goal. The reason is simple. His eldest son Bart is suffering from this disease. In 1997 Kees created the Dutch FSHD Stichting (Foundation). This foundation is raising money to fund the research into FSHD. In 1998 he co-funded Spieren voor Spieren (Muscles for Muscles). The goal for this organisation is funding research for muscle diseases with a young onset. In 2011 the genetic mechanism of FSHD was discovered. For me, the moment to consider the creation of a bio-tech start-up to develop a causal therapy for FSHD. Together with Australian banker Bill Moss in 2014 he founded in the Facio group of companies. Kees is on the board of FSHD Europe, a federation of multiple NMD advocacy organisations across Europe.

Kristi is Vice President Clinical Operations for Avidity Biosciences. As a senior strategic leader for clinical operations, Kristi develops and executes global clinical operations strategy across all development programs and ensures clinical study conduct and integrity are maintained to highest standards and best practices. Kristi has over 30 years of experience in global clinical operations, including green fielding an office in Czech Republic. Kristi has worked in the rare disease space since 2005 and co-founded Agility Clinical, Inc. in 2012, a rare disease focused clinical research organisation. Kristi has a son with a rare disorder and is passionate about ensuring that the patient is a true partner throughout the clinical trial process and educating the patient on how their voice is heard during participation in natural history, registries, and clinical trials.

Lawrence is a neurologist and clinical neurophysiologist at the Calgary Neuromuscular Clinic and is the Director of the Calgary ALS and Motor Neuron Disease Clinic. His research includes phase II and III clinical trials of new therapies for neuromuscular conditions. He is the National Principal Investigator of the Canadian Neuromuscular Disease Registry that now includes thirty-one participating clinics.  He chairs the Canadian Neuromuscular Diseases Network (CAN-NMD) funded by the Canadian Institutes of Health Research and Muscular Dystrophy Canada.  He also chairs the Advisory Group and member Executive Committee of the Canadian Clinical Trial Coordination Centre, an initiative of the Canadian Institutes of Health Research Strategy for Patient-Oriented Research.  Dr. Korngut completed his undergraduate degree in Life Sciences at Queen’s University (Kingston, Canada), medical school and neurology residency at Western University (London, Canada), neuromuscular clinical and research fellowship and Masters of Science in Clinical Epidemiology at the University of Calgary in Alberta, Canada.

Mark is CEO of the FSHD Society and has served as an executive leader of research-focused patient advocacy nonprofit organisations since 2004. He also currently serves as Chair of the Global Task Force until 2025.  Prior to joining the FSHD Society, he was the chief executive officer of NephCure Kidney Global. During his tenure at NephCure, Stone launched the NephCure Accelerating Cures Institute (NACI), a drug discovery initiative anchored by a clinical trial network comprising more than thirty-five sites, which seeks to expedite potential treatments for nephrotic syndrome. Stone was CEO of NephCure Kidney Global from 2014 until the launch of NACI. Prior to his work there, Stone served CFIDS Association of America, the largest private funder of research for chronic fatigue syndrome as chief development officer, and the American Association of Physicians of Indian Origin as CEO. From 2004-2011, he was executive vice president and COO of the Polycystic Kidney Disease (PKD) Foundation.

Mel is Executive Vice President, Patient Experience of Fulcrum Therapeutics. Mr. Hayes has more than 25 years of Global and U.S. experience in all areas of product commercialization including marketing, sales, new product planning, pricing and reimbursement, advocacy, and patient engagement. Prior to Fulcrum, he served as Global Head Commercial, Vice President, Rare Blood Disorders at Sanofi-Genzyme where he led the global commercial organisation for haemophilia. He also served as U.S. Vice President Haemophilia and Global Head, Haematology Rare Blood Disorders at Bioverativ (acquired by Sanofi-Genzyme). Prior to Bioverativ, he served as Global Vice President, Head of Global Marketing and Launch Excellence at Shire and at Baxalta (acquired by Shire) as Global Vice President Haemophilia. Prior to Baxalta, Mr. Hayes spent 10 years and nine years at Bayer and Bristol Myers Squibb respectively in progressive commercial leadership roles where he was responsible for launching products in Diabetes, Cardiovascular Disease, Neurology, Rheumatology, Multiple Sclerosis and Parkinson’s Disease.

Miriam has been a passionate fundraiser for over 16 years and is responsible for fundraising and non-profit management at the Zielgenau GmbH agency. She worked for a fundraising agency in the USA for seven years, most recently as Director of Development for the NephCure Foundation. Through her work with patient organizations and non-profit organizations from a wide range of areas, she developed a passion for the third sector and completed a master’s degree in “MS Nonprofit Management” in the USA while working. She knows the challenges of non-profit organizations and therefore knows that fundraising must be understood as a cross-sectional function in an organization.  Now living in Germany, she has been involved in the German Fundraising Association on a voluntary basis, most recently as a deputy and assessor on the board for six years.  Miriam works with the patient advocacy organisations across Europe in support of Project Mercury.

Neil is a chemical engineer and a member of the Canadian Academy of Engineering. Neil joined Shell Canada Ltd in 1975 and led the development and delivery of world-class energy projects in Canada and abroad. Neil is currently a director of Western Hydrogen and Enlighten Innovations, two cleantech start-ups he founded which are focused on commercialising green fuel technologies and grid-scale battery systems. Neil co-founded the FSHD Canada Foundation, Solve FSHD and Project Mercury.

Nicol’s main research interest is inherited myopathies, in particular congenital myopathies, fascioscapulohumeral muscular dystrophy, and the neuromuscular features of inherited connective tissue disorders. Recently, she has focused on the wide spectrum of RYR1-related myopathies, including those presenting in adulthood. She has started a congenital myopathy biobank to facilitate future research and has joined the international consortium for gene discovery and clinical research for congenital muscle diseases.  She is Chair of the FSHD European Trial Network.

Olga is Senior Vice President, Head of Medical Affairs for Fulcrum Therapeutics.  She has twenty years of experience in medical affairs at such companies as Johnson & Johnson, Merck, Biogen, and Sarepta, leading both global and US functions.  She has worked in the therapeutic areas of neurology, psychiatry, and hemophilia with exposure to rare disease and orphan indications.

Raj started FSHD UK in July 2021 with the idea of bringing together key stakeholders to collaborate and coordinate in getting the UK ready for FSHD clinical trials.  FSHD UK has a network of 6 clinical research sites, multiple advocacy organizations, the UK FSHD Registry, clinicians, researchers and patients.  She began her career in banking and became IT & business projects/portfolio/services manager for a global consumer company. 

Robert has been chair of FSHD Stichting in The Netherlands since 2021. He is owner of Corundum B.V., an IT and IP law consultancy. Prior to that he worked for more than 30 years in various patent attorney, senior counsel and associate general counsel roles at Shell Global in London and The Hague. Robert has an MSc Geochemistry from Utrecht University, LL.B from the University of Law in London, UK, and an LL.M Law and Technology from Tilburg University. He is a registered Dutch and European Patent Attorney and a Solicitor (Law of England and Wales).

Teresinha has over 20 years’ experience working as a Neurologist and later as a Consultant at the Neurosciences Department of the Hospital de Santa Maria in Lisbon. These roles have been completed in conjunction with research work as a member of the Neuromuscular Research Unit at the Institute of Molecular Medicine as well as an Invited Lecturer at the Faculty of Medicine at Lisbon University in addition to a range of other teaching and advisory posts. Her work currently focuses on clinical and research work on hereditary muscle diseases, FSHD and Congenital Myasthenic Syndromes. Simultaneously as a member of the Joint Actions for rare diseases (EUCERD Joint Action and RD-Action), developed a particular interest on Rare Diseases policies. As a result of the policy work become responsible for the concept and setting up of the neuromuscular ERN (EURO-NMD) that integrates sixty-one healthcare providers from across Europe.

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