EURO-DYMA and AFM-Téléthon
Alain is currently chair of the French AFM-Téléthon support group dealing with Myotonic Dystrophies. Concerned by the disease in his close family he acts for increasing awareness about DM1 in the scientific, and medical communities and accelerate drug approval and delivery to the patients. In 2019, he founded the European Federation of Patient associations dedicated to DM1 called Euro-DyMA, to bring the voice of patient in various international projects.
Dr. Llamusí co-founded Arthex in December 2019 and was CEO of the company until May 2023 when the company raised its Series B. Since then Dr. Llamusi is CSO of Arthex Biotech. During the initial steps of the project that led to Arthex foundation, she was granted different competitive acceleration programs (FIPS and Caixaimpulse) to assess the feasibility of the entrepreneurial project, including training in business management and development, IPP, financial and regulatory issues. She holds an MSc and Ph.D. in Biochemistry from the University Miguel Hernández. During her Ph.D. program, she focused on the molecular bases of neuronal regeneration, and subsequently worked in the Department of Genetics as a postdoctoral researcher. She has dedicated more than 13 years investigating the pathogenic mechanisms of rare neuromuscular diseases and approaches to treatment. During this period, she produced more than 30 scientific articles and seven patents..
Ricardo is a Senior Scientist in the Rare and Neurologic Diseases Therapeutic Area at Sanofi, dedicated to developing therapeutic alternatives for rare neuromuscular disorders. He brings extensive experience in the pharmaceutical industry, having previously worked at Novartis and Biogen. Ricardo is deeply invested in unraveling the underlying biology of neuromuscular diseases to enable the discovery of novel therapeutic targets and potential biomarkers. He values strong collaborations with academic partners, recognizing the power of synergy in accelerating progress for the benefit of patients.
Chief Executive Officer Myotonic Dystrophy Foundation
Dr. Tanya Stevenson is the Chief Executive Officer of the Myotonic Dystrophy Foundation (MDF).
Under her leadership, MDF has significantly expanded its global impact, supporting tens of thousands of families in nearly 140 countries. She has been instrumental in strengthening the Foundation’s efforts to connect the global myotonic dystrophy community, provide critical resources and support, advocate for comprehensive care, and accelerate research toward effective treatments and a cure. She is especially proud of the establishment of the Global Alliance for Myotonic Dystrophy Awareness, a collaborative initiative to elevate international awareness and action.
Dr. Stevenson holds a Doctorate of Education and a Master of Public Health in Sociomedical Sciences from Columbia University, and earned dual bachelor's degrees in Psychology and Women’s Studies from the University of California, Los Angeles.