Dr. Angela Nuzzi, Speech and Language Pathologist
Angela Nuzzi is a Speech and Language Pathologist (SLP) and EHDN Language Coordinator from Italy. She has been a visiting Fellow at Cardiff Huntington's Disease Centre and at Loyola University Chicago. Her research interests include swallowing and speech difficulties in Huntington’s Disease, neurolinguistics and tele-rehabilitation."Mealtimes and communication are important parts of our of everyday lives. That's why I believe in the importance of enabling HD people to enjoy these moments with their loved ones, and improving their quality of life!"
Assoc. Prof. Jiri Klempír, MD, PhD - Neurologist, Nutritionist
Jiri Klempir is a neurologist and clinical nutrition specialist working in Movement Disorders Centre in Prague. The centre offers a multidisciplinary service for patients with Huntington's Disease and their families. Jiri Klempir is involved in clinical and scientific research in the field of Huntington's Disease. He closely cooperates with the Czech Huntington Association.
All people need food to live. Nutritional support is a therapy for people who do not get enough nourishment by eating or drinking. Appropriate nutrition improves quality of live and helps us fight against the Huntington´s disease.
Dr. Juliana Bronzova, MD, DSc
Dr. Juliana Bronzova, MD, DSc, brings combined experience of clinical practice, Academic and Pharma Industry research. With leadership in different facets of drug discovery, clinical development and clinical safety during her time in Pharma Industry she was given senior roles in both Research and Development Divisions within the organization.
Since January 2012 she has dedicated her professional and voluntary work to Huntington’s Disease, serving five years as the Science Director of European Huntington’s Disease Network (EHDN) transitioning in January 2017 to a consultancy for EHDN; Sr. Medical Consultant for HD gene-therapy development at UniQure; supporting Bulgarian Huntington’s Disease Association and European Huntington’s Association (EHA).
Dr. med. Ralf Reilmann, Director and founder of George Huntington Institute in Münster, Germany
My main interest is to contribute to the development of disease modifying or novel symptomatic therapies for neurodegenerative diseases. On this path, I chose to focus my work on Huntington's disease (HD) as a genetically defined model of a neurodegenerative disease with relevant patient populations and availability of well defined preclinical models. As founder of the George-Huntington-Institute and chair of the Huntington Unit at the Department of Neurology, University of Muenster, Germany, I established one of the largest cohorts of symptomatic and premanifest HD gene carriers globally (currently ~ 500 participants in the REGISTRY observational study). Within the European Huntington’s Disease Network (EHDN – www.euro-hd.net), I serve as elected member of the Executive Committee, Chair of the “Neuroprotective Therapy Working Group”, member of the "Clinical Trials Task Force", and as Coordinating Global Principle Investigator of randomized multicenter multinational clinical trials. I also serve as Chair of the “Motor Phenotype Working Group” of EHDN and established the EHDN UHDRS-TMS (Unified Huntington's Disease Rating Scale - Total Motor Score) online certification for improved standardization of motor ratings, which is now required for all observational and clinical trials in HD. My main line of research focuses on the development of objective and quantitative motor (“Q-Motor”) outcome measures for clinical trials, e.g., in the setting of international biomarker studies such as TRACK-HD (www.track-hd.net) and PREDICT-HD (www.predict-hd.net).
Professor Monica Busse, Professor and Director of Mind, Brain, Neuroscience Trials in the Centre for Trials Research, Cardiff University
Monica is Professor and Director of Mind, Brain, Neuroscience Trials in the Centre for Trials Research, Cardiff University. She is recognized internationally for bringing high quality clinical trial methodology to complex and previously under-valued rehabilitation interventions in Huntington’s disease (HD). Over the last 10 years, she has led a programme of work that has led to new ways of thinking about exercise and physical activity as a critical life-long strategy for HD families.
Her continued active involvement in global developments in the field of HD, physical activity and rehabilitation has resulted in wide-spread and dynamic collaborations with a variety of academic institutions in the United Kingdom as well as internationally in Germany, Norway, the Netherlands, France, United States and Italy. Since 2007, she has been an invited speaker at 2 world congresses of HD (Dresden, Vancouver), 3 European Annual Plenary Meetings (Stockholm and Barcelona) and a range of further national (UK) and international lectures (Norway, Poland, Ireland). In 2013, she was awarded the prize for the best publication in the Journal of Neurologic Physical Therapy based on contribution to knowledge, design and implementation for her work in developing exercise programmes for people with HD.
In this session, she will review the current state of knowledge from both pre-clinical and clinical studies to inform our understanding of life-style influence in HD and will discuss the challenges and complexities in studying physical and cognitive activity based interventions in HD.
Rodolfo Vera, Physical Education teacher
His wife has HD and Rudy has been active in HD associations in Argentina and Spain. He is a member of the Physical Therapy working group in the European HD Network. Rudy is active in HD awareness and fundraising races and walks. He will lead the walk/run with us Sunday morning under the headline: HD on the Move.
Susan O’Neill, Senior Physiotherapist
Susan is a Senior Physiotherapist at Bloomfield Hospital located in Dublin, Ireland. Bloomfield Hospital provides specialist services for people with Huntington’s disease on an inpatient and outpatient basis. Alongside long term care and palliative care for people with HD, Bloomfield Hospital also offers a sixteen week inpatient assessment programme. Susan has over eight years of clinical experience working in a variety of hospital settings. Since qualifying, she has developed a specialist clinical interest in Neurological Physiotherapy. Her particular interest in Huntington’s disease developed when she started working in Bloomfield Hospital. Susan completed her training at University of Northumbria Newcastle and holds an MSc in Physiotherapy research. She also works in clinical education and guest lectures at Trinity College Dublin. She is a member of the European Huntington’s Disease Network Physiotherapy Working Group.
Professor Sarah Tabrizi, Director, University College London, Huntington's Disease Centre Professor of Clinical Neurology
At UCL’s Institute of Neurology, Sarah leads a synergistic research programme in neurodegeneration from basic cellular mechanisms of protein misfolding to translational clinical research. Sarah has had a major research interest in Huntington’s disease (HD) since her PhD, and Sarah’s team is spearheading a major effort to develop and test new disease-modifying therapies for HD. Sarah is global clinical PI for the Ionis Pharmaceuticals ASO HTT Rx trial which is a first into human clinical trial testing a huntingtin lowering (sometimes called ‘gene silencing’) drug for Huntington’s disease. Her work leading TRACK-HD, an international study to understand the neurobiology of HD, has already identified biomarkers of disease progression that track the earliest phase of the neurodegenerative disease process in clinically-well individuals who carry the HD expansion mutation and those with early disease symptoms. Her work at the laboratory level aims to translate these approaches to patients within the next few years. Sarah also identified a key role for the innate immune system in the pathogenesis of HD that has given rise to important new avenues for research into biomarkers and disease-modifying therapies for HD. Sarah’s research programme is translating HD research directly from the lab to patients with a programme that is ultimately aimed at preventing the neurodegenerative disease process itself.
Georg Bernhard Landwehrmeyer, MD, PhD, FRCP
Georg Bernhard Landwehrmeyer, MD, PhD, FRCP, is currently Full Professor of Neurology “Clinical Neurobiology” at the Ulm University Hospital. As one of the founders of the EHDN (European Huntington’s Disease Network), he was Chair for 10 years of the Executive Committee. EHDN is devoted to clinical and basic studies on Huntington’s Disease while providing a platform for professionals and people affected by HD and their relatives to facilitate working together throughout Europe. He is also Consulting Medical Director at the CHDI Foundation where he coordinates the scientific work in Europe on behalf of CHDI Foundation. He has the role of Global PI at Enroll-HD: the worldwide observational study for Huntington’s disease families – the Prospective Registry Study in a Global HD Cohort. Prof. Landwehrmeyer received his degrees in the M.D. and his Doctorial Thesis at the Albert-Ludwigs-University in Freiburg, Germany. He has also studied at the Royal Victoria Hospital, Queen’s University in Belfast, UK, Kantonsspital in Basel, Switzerland and at MGH and Harvard Medical School, Boston. From 1995 – 1999, he was a staff member at the Albert-Ludwigs-University in Freiburg, Medical in Residency School (Departments of Neurology and Psychiatry). 1999 he received his Board Certification in Neurology and a year later the Venia Legendi and full Professorship (‘C3’) in Neurology at the University of Ulm. Dr. Landwehrmeyer’s background includes pathology and pharmacology aside from clinical neurology. His research interests are focused on neurodegenerative disorders with a special emphasis on movement disorders like Parkinson’s and Huntington’s disease and range from bench work to clinical studies. He continues to show his expertise especially in the field of Huntington’s Disease in numerous clinical trials and researches both nationally and internationally.
Dr. Higgins is the Senior Neuropsychologist in Bloomfield Hospital and Health Services, which provides both inpatient and outpatient services to patients with neurological, neuropsychiatric and mental health conditions. Bloomfield Hospital provides specialist services for those with Huntington’s disease, including long and short-term inpatient services, outpatient services and supportive and educational services to family members. Dr. Higgins’s interest in HD developed alongside her role in Bloomfield and within this role she works clinically, within research and at an inter-organisational level, to further develop services for patients with HD. She is passionate about improving the lives of those with HD and their families.
Dr. Higgins also currently holds the roles of Clinical Tutor in Trinity College Dublin and Adjunct Lecturer in University College Dublin and is an active member of the European Huntington's Disease Network working groups. She also holds the role of Vice Chair of the Neurological Alliance of Ireland. Dr. Higgins completed her clinical training in University College London (UCL) and holds an MSc. Clinical Neuroscience from the Institute of Neurology, UCL.
Ferdinando Squitieri, Neurologist
Ferdinando Squitieri, MD, PhD, is a Neurologist with expertise in Genetics and Psychiatry. He is co-founder and Scientific Officer of Lega Italiana Ricerca Huntington Foundation, based in Rome and leads the Huntington and Rare Diseses Unit at the Research Hospital Casa Sollievo della Sofferenza (San Giovanni Rotondo) and Mendel Institute of Human Genetics (Rome), Italy. He conducted several clinical trials as Principal Investigator and published several articles on HD. Currently, he is Principal Investigator of the following clinical trials: ENROLL-HD, LEGATO-HD, PRIDE-HD and Open PRIDE-HD.
Filipa Júlio, Neuropsychologist
Filipa Júlio is a Portuguese neuropsychologist currently doing her PhD in Huntington’s and Parkinson’s Disease.
Filipa has been involved with HD families for ten years now, both at a professional and personal levels. At a professional level, as a member of research teams that conduct studies with HD patients at IBILI - Institute for Biomedical Imaging and Life Sciences (Faculty of Medicine/University of Coimbra) and as an EHDN Registry Co-investigator at Coimbra Center. At a personal level, doing volunteer work in the Huntington’s Portuguese Association, European Huntington Association, International Huntington Association, HDBuzz and HDYO.
Amy Merkel, Nurse and Yoga instructor
Amy Merkel is a nurse with 15 years experience working with persons living in long term care settings and she is a yoga instructor with 11 years experience working with various communities across the United States. Amy is the founder of Starfish Yoga, a small yoga company focused on encouraging constructive coping skills with struggling populations; primarily persons and families affected by progressive neurological disorders, prison sentences, and sexual abuse survival.
Amy is a member of a family deeply affected by Huntington’s Disease - a prime motivating factor that inspires her to continue to work and share positive energy in the nursing home setting and serve as a support group facilitator in Wisconsin.
Amy received her nursing degree in Milwaukee, Wisconsin. She has received numerous yoga teacher certifications through Yoga Alliance and Yoga Alliance International with schools in Baja, Mexico, Portland Oregon, and Pondicherry, India.
Melinda Kavanaugh, Clinical social worker and Assistant Professor of Social work
Dr. Kavanaugh is a licensed clinical social worker and assistant professor of social work at the University of Wisconsin-Milwaukee. She has over 15 years’ experience in practice and research with families and youth living with neurological disorders. She has published and presented widely on the role children and youth play as caregivers, and is one of the few U.S. based experts in her field. In addition to her primary research and program development with both Huntington’s disease (HD) and Amyotrophic lateral Sclerosis (ALS), Dr. Kavanaugh conducts research with both U.S. and international organizations and community groups to develop evidence based supportive and educational programs for young caregivers.
James Pollard, Special education teacher and administrator
"I trained and worked as a special education teacher and administrator. Then I found myself working in a nursing home where, thirty years ago, I met residents and their families living with HD. Since then I've had the unique and wonderful opportunity to walk beside many hundreds as they walked their HD roads. I've cared for them, listened to them and collaborated with them on projects of all kinds. I've traveled across the United States, Canada, Australia and much of Europe as their guest and as a volunteer to their national HD family associations. I've gathered countless stories of how they've faced their challenges, how they've solved so many problems and how they gracefully face their futures. As I travel for and speak with them, I try to pass on the lessons learned by others who have walked their own HD roads. So much remains to be addressed but so many have already learned so much. I aim and hope to pass it on!"
Dr. Jennifer Hoblyn, Consultant Psychiatrist and Clinical Director
Dr. Jennifer Hoblyn is a Consultant Psychiatrist and the Clinical Director of Bloomfield Health Services, a 150 bed Charitable Institution guided by the Quaker Ethos. She is a Clinical Senior lecturer in the Department of Psychiatry, Trinity College Dublin. After graduating from Medical School she did her original Psychiatry training in Dublin and then at Mount Sinai in New York City. After completing a Fellowship in New York she undertook further post graduate work in Epidemiology and Biostatistics in Berkeley, California. She then worked as the Clinical Director of Inpatient, Liaison and Emergency Psychiatry services in Palo Alto and as an Assistant Professor at Stanford University prior to returning home to Ireland in the autumn of 2012. She is currently focused on developing services, in particular for those with Huntington’s disease and their caregivers. At Bloomfield she has developed a Multidisciplinary Treatment Team, a 19 bed unit for those with HD, a 16 week Intensive Program for those with HD, a HD Café based on the successful AD model and the Team is now planning Day Services for those with HD and their caregivers. She is a member of the Behavioral working group of the European Huntingtons disease Network and a member of the Huntington’s disease Study Group of America.
Alzbeta Mühlbäck, MD
Alzbeta Mühlbäck, MD is the senior consultant of three departments at kbo Isar-Amper-Klinikum in Taufkirchen upon Vils (Munich suburb, Germany): neuropsychiatric ward (Huntington Center South), two geriatric psychiatry wards. She graduated from the Medical School of Olomouc University (Czech Republic), afterwards being active as a physician in Austria and Germany. Since 2010 Alzbeta is working in Taufkirchen, initially in the department of general psychiatry, soon after in the neuropsychiatric ward, since November 2014 she became the senior consultant. In this function she also offers regular ambulatory doctor’s consultation hours for HD patients and their relatives including genetic counseling. She is a member of the EHDN (European Huntington Disease Network) and its Working Group for Genetic Counseling and Testing. She provides medical consulting for the EHA and helped to establish the online service ''Ask The Doctor'' for the HD community at EHA.
Lia van Gelder
Lia van Gelder is teamleader for Huntingtonafdeling Everest Heemhof en Dagbehandeling Markenhof in the Netherlands. She has several years of experience with HD in the nursing home, both daycare and integrated care. In the department they use the ERM – Early Risk Managment method. They find the method very helpful in dealing with difficult behaviour and improves the care for the clients. The model will be presented by Lia van Gelder and her colleagues Karen Lammertsen and Niels Reinders.
Dirk Liessens, psychiatrist
Psychiater Dirk Liessens, Head of University Psychiatric Centre St. Kamilus, Bierbeek (Leuven) Belgium. Dr. Liessens has been working in HD since many years ago. During these years he has had a strong collaboration with the HD organisation in Belgium. Many family members and professionals finds his thoughts about how to handle frustration and difficult behaviour very useful.