Kees van der Graaf is a founding investor in FSHD Unlimited and chairs its Board. In 1997, Kees and his wife, Renée, established the Dutch FSHD Foundation with the aim of raising funds for research. For over 30 years, Kees worked for Unilever, where his last position was member of the Board of Directors responsible for all European business activities. Thereafter, he was Executive-in-Residence at the IMD Business School in Lausanne, Switzerland. He currently holds supervisory positions at various multinational companies and at an institute of higher education. Kees was one of the initiators of the Dutch Muscles for Muscles (Spieren voor Spieren) fund-raising project, and was president of that foundation for 7 years. Kees and Renée have three sons, the eldest of whom has FSHD.
Bill Moss AO is a founding investor in FSHD Unlimited and serves on its Board. Bill spent 23 years as a senior executive and Executive Director with Macquarie Group, the pre-eminent Australian investment bank. In 2007, he left Macquarie to pursue philanthropic initiatives, which included establishing the FSHD Global Research Foundation, Australia's first not-for-profit organization focused on finding a treatment or cure for FSHD, of which Bill suffers. On January 26, 2015, Bill was awarded one of Australia's highest honors, Officer of the Order of Australia (AO), for his contribution and distinguished service to the community at large and in championing the disability sector. Bill is also highly sought after for his commentaries on the general economy, social justice, and the ongoing need for Australia to do more to advance the interests of the country's disabled and disadvantaged.
Neil Camarta is a co-founder of FSHD Unlimited and a member of its Board. He is currently President & CEO of Western Hydrogen Ltd, and prior to that held the position of Executive Vice-President, Natural Gas for Suncor Energy Inc. Neil is the founder and CEO of the FSHD Canada Foundation. He also sits on the board of the Science Alberta Foundation and on the ENMAX Board of Directors, and previously served on the board of the Alberta Shock Trauma Air Rescue Society (STARS). He joined Shell Canada Ltd in 1975 and held senior positions in Canada and abroad. Neil retired from Shell in 2005 and worked as Senior Vice President of Petro-Canada's Oil Sands business.
Dr. Cord Dohrmann is a Board Member of FSHD Unlimited. Cord is the Chief Scientific Officer and a member of the Management Board of Evotec, Facio's strategic drug discovery partner. He also serves on the Supervisory Board of Eternygen GmbH. Cord has spent over 20 years in biomedical research at leading academic institutions and in the biotech industry. Before joining Evotec in 2010, he held various management positions including CEO at DeveloGen, where he led the company from a start-up to an internationally recognized metabolic disease company. Cord received his Ph.D. in Cell and Developmental Biology from Harvard Medical School in Boston, USA and has been consulting the European Commission, the Max-Planck-Institute as well as venture capital firms.
David Mackay is a Board Member of FSHD Unlimited. David held a number of key positions at Kellogg Company in the United States, Australia, the United Kingdom, and Ireland, retiring as president and chief executive officer. He was also a member of Kellogg Company's Board of Directors and Executive Management Committee. He holds a Bachelor's degree in business from Charles Sturt University, Australia. Currently, David serves as Director at Clorox and Fortune Brands. David's wife, Michelle, has FSHD.
Chip Wilson is a Board Member of FSHD Unlimited. Chip is an entrepreneur, visionary, business leader, and philanthropist. He founded the yoga-inspired clothing company, lululemon athletica, and is credited with starting the “athleisure” retail category, which has expanded into a $100-billion-a-year global business. More recently, he created a portfolio of companies called Hold It All, which directly reflects his diverse interests, personal vision and values. His philanthropic initiatives include imagine1day, a non-profit organization committed to bringing quality education to all Ethiopians by 2030, public arts and parks initiatives throughout Metro Vancouver, and The Chip and Shannon Wilson School of Design at Kwantlen Polytechnic University. Chip has FSHD.
Otto Postma is the managing director of FSHD Unlimited, and secretary of its Board. As a strategic advisor to FSHD Unlimited, he was actively involved in the establishment and early development of the Facio group of companies. He joined FSHD Unlimited from MedSciences Capital (MSC), a provider of equity funding to emerging medical companies. Prior, Otto co-founded (the predecessor of) Pharming Group NV, where he held various management positions in the fields of business and corporate development.
David Dasberg is the managing director of Facio Therapies and Facio Intellectual Property. He has over 20 years' experience with the development and commercialization of (bio)pharmaceutical products. As an independent consultant, David performed a feasibility study commissioned by the Dutch FSHD Foundation that laid the foundation for the Facio group of companies. Prior, David held business development positions of increasing responsibility at Pharming Group and Fresenius Kabi, where his last position was at the Vice President level.
Wouter Suurmond is corporate development manager at Facio Therapies. He graduated in biomedical sciences from Utrecht University. Wouter wrote his thesis for a spinoff company from the research group of Prof Hans Clevers at the Hubrecht Institute of the Royal Netherlands Academy of Sciences. During his studies he also took minor subjects in innovation management and business and economics.
Joris De Maeyer is seconded to Facio from DM&S consulting (Mechelen, Belgium) as Director R&D. He has over 15 years' experience leading outsourced and collaborative programs in drug discovery and early drug development. Joris had various roles of increasing responsibility at Johnson & Johnson, Movetis and Shire. In his most recent position as Director Discovery, he was responsible for part of Shire's GI and CNS discovery portfolios. Joris holds a PhD (medical sciences) from Ghent University and an MSc (bioscience engineering in cell and gene biotechnology) from the Catholic University of Leuven.
Lars Bastiaanse is seconded to Facio from PMD Consulting (Riel, Netherlands) as Director Development. He has 20 years' experience with drug development, project management, and change management. Among his clients are both established and start-up biopharmaceutical companies from Europe, the US, and Japan. Lars was general manager of Kinesis Pharma and of 3D-PharmXchange, two independent drug development consultancy firms. Prior, he held positions of increasing seniority at various Johnson & Johnson companies.
Adam Cohen, MD, PhD is CEO of the Center for Human Drug Research (CHDR) in Leiden, The Netherlands, which he co-founded over 25 years ago. CHDR (www.chdr.nl) is a prominent consultant to (bio)pharmaceutical companies, with special emphasis on early drug development and proof-of-concept studies in patients. Dr Cohen is also Professor of Clinical Pharmacology at Leiden University Medical Center (LUMC) and has a clinical attachment to LUMC's Department of Nephrology. He authored more than 200 publications on a wide range of clinical pharmacological subjects. He is Editor-in-chief of the British Journal of Clinical Pharmacology.
Rune Frants, PhD is emeritus Professor of Medical Genetics at Leiden University Medical Center, The Netherlands. Dr Frants has worked on a plethora of genetically determined disorders, including neuromuscular diseases, in particular FSHD; neurogenetics, in particular migraine and other forms of headache; lung emphysema; gastric cancer; skin cancer; and cardiovascular disease. He has mentored some 30 PhD students and authored some 400 peer-reviewed articles. Currently, Dr Frants consults with the Center for Medical Systems Biology and the Leiden Center for Translational Neuroscience. He is also a member of the Scientific Advisory Board of the US FSH Society.
George Padberg, MD, PhD is emeritus Professor of Neurology and former Head of the Department of Neurology at Radboud University Medical Center in Nijmegen, The Netherlands. His 1982 PhD thesis is still regarded as a landmark study of FSHD. He is an author of about 150 publications, mainly on FSHD, but also on Möbius syndrome, spinal muscular atrophy, limb girdle muscular dystrophy and forms of cancer. Dr Padberg serves on various scientific boards, including the Scientific Advisory Board of the US FSH Society. He also sits on the Board of the Dutch FSHD Foundation and is active as a medical advisor in the Netherlands Association of Neuromuscular Diseases. In 2008, he was named Officer in the Order of Orange Nassau.
The FSHD Global Research Foundation is an Australian not-for-profit organization dedicated to finding treatments and a cure for the debilitating disease Facioscapulohumeral Muscular Dystrophy (FSHD). Established in 2007, by businessman, philanthropist and FSHD sufferer, Bill Moss AO, this pure charity allocates 100% of all tax deductible donations to fund world-class medical research and medical education - having established 34 ongoing medical research grants across nine countries. More information is available on fshdglobal.org.
The Dutch FSHD Foundation stimulates, facilitates, and financially supports solid scientific research into the causes of FSHD, in order to find treatments and develop solutions that help improve patients' quality of life. More information is available on www.fshd.nl.
The singular goal of the FSHD Canada Foundation is to help find a cure - as soon as possible - for Canadians who suffer from FSHD. To accomplish this, the Foundation aims to reach out to all Canadians to make them aware of what is going on in FSHD research and to solicit financial support for the critical research required to find a cure. The Foundation will then use these funds to support FSHD research - in Canada and around the world. More information is available on www.fshd.ca.
Amis FSH (Friends of FSH) is the French, government-recognized, not-for-profit organization dedicated to finding a cure for FSHD. Amis FSH seeks to raise public awareness of FSHD, actively supports FSHD research, and brings together patients, scientists and clinicians. More information is available on www.amisfsh.fr.
Evotec is a worldwide leading drug discovery and development company focused on rapidly progressing innovative product approaches with leading pharmaceutical and biotechnology companies. Evotec has long-term alliances with partners including Bayer, Boehringer Ingelheim, CHDI, Genentech, Janssen Pharmaceuticals, MedImmune/AstraZeneca, Roche and UCB. For more information, please visit www.evotec.com.
The Leiden University Medical Center is a modern university medical center for research, education and patient care with a high quality profile and a strong scientific orientation. The department of Human Genetics is a broadly oriented research department with focus on the (epi)genomic contribution to inherited and acquired diseases. The department is led by Prof Dr Silvère van der Maarel, who is one of the leading scientific experts in the field of FSHD. For more information, please visit www.lumc.nl/org/humane-genetica/research/.
The University of Rochester Medical Center is one of the leading academic medical centers in the US and focuses on health research, teaching, patient care and community outreach. The Neuromuscular Disease Center performs clinical and genetic research and provides diagnosis and comprehensive treatment of Neuromuscular diseases. Prof Dr Rabi Tawil is Director of the Fields Center for FSHD Research at URMC. For more information, please visit www.urmc.rochester.edu/fields-center/.