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Management and Board

Ignacio Muñoz-Sanjuan

President and founder​

Ignacio Muñoz-Sanjuan

Ignacio (Nacho) is a neuroscientist working at CHDI Foundation 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
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Roger Cachope

Vice President

Roger Cachope

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. He held then postdoctoral positions in the U.S. at Albert Einstein College of Medicine and University of Maryland School of Medicine, on synaptic plasticity and on animal models of neurodegenerative diseases. Roger is currently Director, Systems Neurobiology at CHDI Foundation in Los Angeles. Through Factor-H, Roger pursues to improve access by HD populations to optimal medical care. Roger is Vice-President and a Board Member of Factor-H.
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Claudia Perandones

Co-founder

Claudia Perandones

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 is a co-founder and a Board Member of Factor-H. Ignacio started Factor-H in 2012 together with Claudia Perandones to help Latin American families suffering from Huntington's disease.
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Jamie Levey

Treasurer

Jamie Levey

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
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Jimmy Pollard

Board Member

Jimmy Pollard

His own family unaffected, Jimmy first encountered Huntington’s Disease 35 years ago when a young woman came to reside at the nursing home in which he worked. Having previously worked in Special Education as a classroom teacher and later as an instructor of graduate level students, he saw the importance of accommodating the cognitive challenges that those nursing home residents faced as their HD progressed. He has spoken on this topic with both families and professional colleagues at support groups, conferences and national meetings. He is recognized as the author of the self-published “Hurry Up and Wait: A Cognitive Care Companion for HD in the Middle and More Advanced Years”. A former licensed nursing home administrator, he’s managed programs in special ed collaboratives and assisted living facilities, state hospitals and nursing homes that specialize in the care of those living with HD. He’s a lifelong resident of Lowell, Massachusetts where he lives with his wife and their extended family of adult children and seven grandchildren.

Mati Gomis

Board member

Mati Gomis

Mati is a Spanish national who has spent most of her professional career working in Middle East countries. As a Humanitarian & Development worker, she has worked on various settings and managing programs in a wide range of themes related to heath, youth and civic engagement, emergency response, water and sanitation, food security and livelihoods, women's rights, advocacy and community development. She has worked for the UN and non-governmental organizations and has done a variety of consultancies providing expertise and guidance on strategic planning, program design and evaluation. She is a graduate from Drexel University, PA, in International Studies, with a Master Degree on Gender Studies and Equal Opportunity Policies and advanced graduate degree in Peacebuilding from American University, Washington DC. She is currently based in the Mediterranean, living between Damascus and Barcelona.

Evelyn Galstian

Secretary

Evelyn Galstian

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!
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Catherine Martin

Board Member

Catherine Martin

Cat comes from an HD family and has collaborated with Factor-H in the past, under her role as the CEO of HDYO, the HD Youth Organization. Currently Cat is the owner of Community Engagement Solutions International. Cat is an experienced director with a demonstrated 20-year history of working in the non-profit organization management industry, in rare disease and patient advocacy, supporting young people and families and developing clinical practice models.

Nicanor Cardeñosa

Director df Communication

Nicanor Cardeñosa

Nicanor Cardeñosa is a journalist graduated from the Complutense University of Madrid who has worked for media such as El País, El Mundo, or COPE. He has worked as a consultant in Communication for companies such as BP, and in advertising and marketing for Microsoft.

Associates

Marina González de Kauffman

Senior Venezuelan associate

Marina González de Kauffman

Marina G. de Kauffman has a M.S. in Architecture, and is president of the Habitat LUZ Foundation, part of the University of Zulia, an organization committed to the transformation processes for the achievement of a comprehensive social well-being of Venezuelan communities. Its main partners are academic, community-based organizations, NGOs and local governments. Marina is a professor-researcher at the same university where she also coordinates graduate and community service programs. She is an expert in development management programs and socio-community projects. Her connection to Huntington's Disease arose through a multi-actor approach to development programs that were developed between 2005 and 2007 in Barranquitas, the world's highest incidence cluster of Huntington's Disease. Since then she has remained linked to the community through various projects of the Habitat LUZ Foundation together with other agents. Since 2018, she has been the coordinator of Factor-H’s Programs and Projects in Venezuela through Habitat LUZ.

Zuleima Bonilla

Colombian coordinator

Zuleima Bonilla

Zuleima obtained her degrees in bacteriology and clinical microbiology, specializing in biotechnology, quality assurance and health services audit from the University of Santander and the Universidad Popular del Cesar, in Colombia. Her employment as a clinical laboratory technician in Valledupar’s public hospitals led her to work with vulnerable communities on a variety of strategic projects, including habits for healthy living, training of non-formal groups aimed at strengthening the social sector, improving mental health among the displaced populations in Colombia. Zuleima is one of the founding members and director of the Mariamarta Foundation, FUNMART, an organization dedicated to the active search for those affected by rare diseases, in order to improve their social and health conditions. Zuleima acts as the projects coordinator in the country.

Arnel Arroyo Diaz

Social coordinator, Colombia

Arnel Arroyo Diaz

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.

Gianni Munizza

European associate

Gianni Munizza

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.

Sonia Moreno

Senior Colombnian associate

Sonia Moreno

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

Leyla Mieles

Colombian administrative coordinator

Leyla Mieles

A native of Santana, Magdalena, and raised in Valledupar, Cesar,, Leyla is the daughter of a nurse and mother of two children. She graduated as a financial administrator and has more than 18 years of experience in health services, auditing, billing, recovery, admission, authorization, service sales, and care of many users. Throughout her career, she has dedicated herself to social work and being a leader in health institutions of the department of Cesar as well as in private clinics. Leyla is one of the founding members and administrative director of the Mariamarta Foundation, FUNMART, an organization dedicated to the active search for those affected by rare diseases, in order to improve their social and health conditions. In 2017, she was instrumental in creating collaborative efforts between FUNMART and Factor-H, specifically with the Project Abrazos, the kids’ program. Leyla acts as the administrative project coordinator in the country.

Oscar Mario

Colombian associate

Oscar Mario

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.

Selene Capodarca

European associate

Selene Capodarca

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.

Oxana Lavrova

California associate

Oxana lavrova

Oxana is a native of Saint Petersburg, Russia, and currently works at CHDI Management as a Program Manager taking care of budgets, timelines, overall management, and administration of the projects for the Science team. Before joining CHDI Management, Oxana worked in the Grants and Contracts office for a university, where she facilitated submission and management of grants from the US Government and private foundations. Oxana loves art, camping, and her family! She is excited to be helping Factor-H to achieve its goals.

Brayan Alexander Hernández

Asistente Jurídica

Brayan Alexander Hernández

Brayan Alexander Hernández was born in the city of Tunja and currently resides in Valledupar, Colombia. Lawyer Cum laude from the Universidad Santo Tomás, asociated legal researcher in the areas of international law, human rights, constitutional and migration. Now, Brayan is pursuing postgraduate studies in Constitutional Law at the Externado University of Colombia.   His professional practice has been focused on community work and with particulary vulnerable groups. He is linked to the UNHCR (United Nations High Commissioner for Refugees) as coordinator of a Legal Assistance Project for Populations in Need of International Protection and he also acts as Legal Advisor for Factor-H in cooperation with the University of the Andean Area in Valledupar.

Elena Cattaneo

Senior European Advisor

Elena Cattaneo

Dr. Elena Cattaneo has been an advocate of HD research and a key aide to Factor-H since its inception. Dr. Cattaneo is a leading scientist studying the pathogenic mechanisms of Huntington’s disease and the Director of the Laboratory of Stem Cell Biology and Pharmacology of Neurodegenerative Diseases. She is also the Director of the Stem Cell Center at the University of Milano, and was appointed as a Senator for Life to the Italian Parliament in 2013. Dr. Cattaneo co-organized the visit of Latin American families to meet Pope Francis at the Vatican in 2017 together with Factor-H and Charles Sabine.

Alexandra Fisher

European associate

Alexandra Fisher

Alex is an Occupational Therapist working in a UK-based HD and Neuropsychiatry service. She is also the HD Module Lead & a Clinical Lecturer on the University of Birmingham's MSc Neuropsychiatry Course ,as well as a Lead in several European HD Network (EHDN) Working Groups. Alex is undertaking her PhD in Social Cognition and Functioning in HD and feels passionately about dispelling occupational deprivation, maintaining skills and promoting equitable care for people living with HD now

Contact us at:

info@factor-h.org
+1 (310) 703-2973

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Factor-H is a registered 501-(c)3 non-profit foundation in the United States (EIN 82-5395108)

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