Factor-H is a 501 (c)3 organization based in Los Angeles, California.
All of us in the management board have been working in HD research for many years in various capacities. We have in common our desire to help families affected by HD through science, medicine and social strategies to improve their quality of life.
President and founder
Ignacio (Nacho) is a neuroscientist working at CHDI Foundation (www.chdifoundation.org) where he leads a large team of scientists developing therapeutics for Huntington's disease. A native of Spain, Ignacio lives in Los Angeles. He obtained his PhD at the Johns Hopkins University and conducted postdoctoral studies at the Rockefeller University. He is the author of over 60 scientific publications and book chapters.
Ignacio started Factor-H in 2012 together with Claudia Perandones to help Latin American families suffering from Huntington's disease.
Ignacio is President and a Board Member of Factor-H
Please contact him at Ignacio@factor-h.org
Roger Cachope is a Colombian physician and neuroscientist who earned his Medical Doctor and Master's in Neurophysiology degrees from National University of Colombia, after which he devoted some years of clinical practice at the Central League Against Epilepsy Foundation. After postdoctoral experience in the U.S. at Albert Einstein College of Medicine and University of Maryland, Roger joined CHDI Foundation as Director of Systems Neurobiology, where he seeks to understand the brain circuitry impairments responsible for HD symptomatology, as well as the identification of potential therapeutic targets. Through Factor-H, Roger pursues to improve access from HD populations to medical care.
Roger is a Board Member of Factor-H, and also leads the Medical Advisory Board for Factor-H.
Please contact him at Roger@factor-h.org
Evelyn works at CHDI Management since 2006 as a Program Manager, where she works with cross-functional teams including finance, legal and scientific teams to manage key collaborations and partnerships with external academic and industrial organizations. Evelyn graduated from UCLA and has an MBA from EM_LYON. Previously, Evelyn Galstian worked at genOway, a French biotech company, to manage internal projects and assist the Director of Technology Transfer in business development activities. Upon returning to the United States, Evelyn joined the Department of Cardiothoracic Surgery at UCLA. She managed the practice of the Director of the Lung Transplant Program. This included research, clinical trial studies with external collaborators, and an outpatient clinic for pre- and post-operative cardiac and transplant patients.
Evelyn also loves to ride her Harley-Davidson motorcycle!
Please contact her at Evelyn@factor-h.org
Gianfranco (Gianni) Munizza has a degree in International Relations. For more than 10 years, he has been working as project manager at the University of Milan, in the Laboratory of Stem Cell Biology and Pharmacology of Neurodegenerative Diseases. His main duties are to manage and to support the coordination and development of large international research partnerships, aimed at a better understanding of the mechanisms regulating neurodegenerations such as Huntington’s and Parkinson’s disease and at developing regenerative medicine strategies suitable for clinical application (www.neurostemcell.org - www.neurostemcellrepair.org). He has experience in science communication and performing arts management.
Arnel Arroyo Díaz
Social Coordinator in Colombia
Arnel Arroyo Díaz graduated with a degree in film and television from the Universidad del Magdalena in Colombia. He has worked to develop cinematographic projects that highlight social issues. For the last three years he has worked with Factor-H and Funcovulc to improve the quality of life of patients with Huntington’s in the Caribbean region of Colombia. He is now a social coordinator for Factor-H, working together with the Fundacion of Antioquia.
Phillip J. Hardt obtained his Master’s degree in English from Western New Mexico University in Computer Information Systems. He is an HD advocate who believes that every person with HD and their families deserve the highest possible quality of living while patiently waiting on a cure!
He has received many awards for service to the HD community including the HD Lighthouse “Making the Light Brighter” award in 2001 and HDSA’s “2001 Person of the Year” award his for being an example to everyone with HD. In 2001 he was selected as the HDSA Arizona Affiliate Director for 8 years were he successfully helped thousands of individuals get off the streets, onto benefits and into safe assisted-living or nursing homes. He also has directed the Arizona HD and Juvenile HD summer camps for 6 years. In October 2004, Phillip was privileged to be only one of seven individuals asked to bear testimony to the National Institutes of Health (NIH) Congressional Committee On Genetic Discrimination. He led three humanitarian missions to Juan de Acosta, Medellin and Bogota Colombia in 2006, 2007 and 2008. In December 2016 he met Nacho in Colombia and a friendship was struck up immediately.
See Philip’s work at www.philliphardt.com
Selene Capodarca has a degree in Pharmaceutical Chemistry and Technology from the University of Florence, Italy. She worked in clinical development for almost 20 years in Ireland, US and Italy, with a particular focus on neuroscience. In 2013 she joined the European Huntington Disease Network and she has been involved in several tasks supporting the activities of the network, such as Regional Coordination for Italy, clinical trial support, coordination of Cognitive Phenotype Working Group. Selene is currently the Global Project Manager for the Enroll-HD study, a global observational study for Huntington Disease.
Claudia Perandones is a physician specialized in Medical Genetics, and has a Master’s degree in Molecular Biology and Genetic Engineering. She completed her PhD thesis in Molecular Biology of Neurodegenerative Diseases.
She is a member of the Scientific and Technological Coordination Unit of the Board of the National Administration of Laboratories and Institutes of Health (ANLIS) “Dr. Carlos G. Malbrán,” and the Scientific Director of the Latin American Network for Huntington’s Disease (RLAH).
She has published 25 peer-reviewed papers, two books, has contributed in multiple chapters of books about movement disorders, and has received numerous awards for her scientific and humanitarian work.
Claudia Perandones is one of the Founders of Factor-H and now a leading person in our Medical Advisory Board
Jamie works with CHDI Foundation where she currently co-leads the Clinical Platform group with the Enroll-HD study at its core. She also manages the European Huntington’s Disease Network (EHDN), a non-profit clinical network funded by CHDI, where she is primarily responsible for the business and administration aspects of the network. She received an MBA in Finance and Investments in 2000 from CUNY Baruch College in New York and is a candidate for an MS in Bioethics. Jamie is an HD family member. She sits on the HD Family Council at Terence Cardinal Cooke Healthcare Center, is an ex-officio member of the EHDN Executive Committee, and is an advisory member of the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, a joint project of Columbia University Medical Center and the Hastings Center.
Jamie is a Board Member for Factor-H
Please contact her at Jamie@factor-h.org
Bianca Moura, a Brazilian-American, earned her degree from UCLA in Development Studies. She lived in Miami for 25 years where she worked for Disney Publishing Latin America, led an international financial business and served as Board President before becoming Executive Director at The Rhythm Foundation, a non-profit dedicated to increasing international awareness and strengthening South Florida communities with live music. At The Rhythm Foundation, Bianca built effective internal processes to promote programs supporting the organization's mission.She led the organizational strategy implementation, donor management systems, and community relations. Back in Southern California, Bianca brings her professional experience in varied sectors to direct Factor H’s expansion and strategic planning as the Executive Director.
Sonia Moreno is a neuro-psychologist and a specialist in neuro-rehabilitation. She obtained her doctorate in behavioral neuroscience from the University Pablo Olavide in Spain. She has worked for over 20 years in the Neuroscience Unit at the University of Antioquia (Colombia), where her focus is on neurodegenerative indications, including HD. She is an author of 35 publications and has received numerous awards for her research work. Currently she is part of Factor-H where she works actively in improving the quality of life of patients throughout Latin America.
Sonia is an associated Factor-H member in Medellin
Lennie Pineda earned her college degree in nursing at the University of Zulia, Venezuela and the Master of Science in biology, human genetics mention at the Venezuelan Institute of Scientific Research. She was a professor and researcher at the Institute of Genetic Research, Faculty of Medicine, University of Zulia, Venezuela, and became its director from 1991 to 1997. Her research activity has been directed mainly to the knowledge of the genetic structure of zulian populations and recently she is devoted to the study of ethical issues in human genetic research and the application of predictive tests in Huntington disease. Now she is retired but coordinates the HD Program at the institute. She has authored numerous publications and received numerous awards for her work at the University of Zulia. She was cofounder of the Venezuelan Society of Genetics where she served as President and cofounder of the Venezuelan Society of Human Genetics recently created.
Lennie oversees all Factor-H efforts in Maracaibo, Venezuela and is leading efforts in the areas of genetic diagnosis and counseling
Social Coordinator in Colombia
Alexis Garcés is an HD family member from Medellín and recently joined Factor-H as a youth leader and social coordinator in the Antioquia region. He has a background in business administration and social work. Previously Alexis worked with various humanitarian organizations focused on helping youth living on the streets and suffering from drug addiction.
Oscar is a Colombian biologist graduated from the Universidad de Sucre; he has worked with local communities in environmental education and preservation of natural resources. Actually he works as a high school science teacher in Bogotá - Colombia; he has been a Factor H volunteer since 2016 in Project Abrazos, managing resources for recreational, educational and integration activities.