Governance

HDBuzz is a trusted global resource for the Huntington’s disease community. To protect that trust, we need clear structures that ensure transparency, accountability, and independence. Governance provides the framework for how HDBuzz is run, how decisions are made, and how we safeguard the values of accuracy, accessibility, and neutrality. Strong governance also ensures we can grow sustainably, manage resources responsibly, and respond effectively to the needs of the community.

HDBuzz Board

The Board provides formal oversight and leadership. It is responsible for the strategic direction, financial stewardship, and compliance of HDBuzz as an independent nonprofit. The Board ensures that HDBuzz operates in line with its mission, makes sound long-term decisions, and remains accountable to the community we serve. A functioning Board also strengthens our credibility with partners and funders, allowing us to sustain and expand our work.

Meet our Board members:

Karen Newman

Karen Newman is Chair of the Board of the Huntington’s Disease Foundation (HDF). She has been a long-standing advocate for the Huntington’s disease community, bringing a strong commitment to governance, strategic leadership, and patient-focused impact. As Board Chair, Karen works closely with fellow trustees and the executive team to guide HDF’s mission of accelerating research, supporting families, and improving understanding of Huntington’s disease. Her leadership emphasizes transparency, collaboration, and ensuring that the voices of people affected by HD remain central to the Foundation’s work.

Leslie Thompson

Michael Berman

Michael Berman has been actively involved in Huntington’s disease (HD) research since 2014. He co-founded the Berman-Topper Career Development Fellowship program, which provides critical early-career support for scientists pursuing innovative HD research. In addition to this philanthropic commitment, Michael works directly with a number of scientists and leading research institutions to help accelerate progress toward clinical applications. He also served on the board of Atalanta Therapeutics for five years, contributing to the company’s mission of advancing RNAi-based therapeutics for neurodegenerative diseases. Michael is dedicated to fostering scientific breakthroughs and improving the lives of families affected by HD.

HDBuzz Advisory Board

HDBuzz also relies on a network of advisors who bring diverse expertise and perspectives. The Advisory Board supports the Editors and Board by providing scientific, clinical, and community insights. Advisors do not make governance or financial decisions but serve as a sounding board, helping us stay at the forefront of HD science and aligned with the priorities of families and researchers alike. Their input ensures that HDBuzz content remains scientifically rigorous, relevant, and accessible.

Meet our Advisory Board members:

Hugh Rickards

Hugh is a neuropsychiatrist from the UK who has worked with 4 generations of HD families over the last 35 years.  His research interests are mainly related to the changes in emotions and behaviour seen in people with HD.  He is also interested in design and delivery of HD clinical trials.  More recently, he has set up the HEATED group (Huntington’s Equal Access to Effective Drugs) to identify any barriers that might prevent people from getting any effective drugs that emerge from clinical trials.  When he is not working he likes to play jazz piano and is a barista in his local park.

Ray Truant

Ray Truant completed his PhD at University of Toronto and was a Research Associate at the Howard Hughes Medical Research Institute at Duke University until 2000. He started his laboratory at McMaster in the Department of Biochemistry on a new problem of Huntingtin protein and how it locates to regions within cells. From 2007-21, he was Chair of the Scientific Advisory board and Board Officer of the Huntington Society of Canada.  In 2011, with the start of HDBuzz.net, he was the founding External Scientific Editor. In 2021, his lab launched SCASource.net for patients and families with Ataxia diseases. He has consulted and collaborated with many biotech and pharmaceutical companies on HD drug efforts. He is currently Full Professor at McMaster and Director of the McMaster Centre for Advanced Light Microscopy (CALM). His lab uses cell biology in human cells derived from patients together with new microscopy method to watch huntingtin’s normal biological functions.

Vanessa Wheeler

Vanessa Wheeler is an Associate Professor in the Center for Genomic Medicine and the Department of Neurology at the Massachusetts General Hospital (MGH) and Harvard Medical School, and Mannion Family MGH Research Scholar. She completed her undergraduate degree in Biochemistry at the University of Cambridge, a Ph.D. in Molecular Genetics at Imperial College of Science, Technology and Medicine, University of London and then conducted her postdoctoral training at MGH. Her research lab is primarily focused on Huntington’s disease (HD) but also studies other “repeat expansion” diseases. HD and these other diseases are caused by inheriting an unusually long stretch of repeating letters of the DNA code within a particular gene (in HD, this is a “CAG” repeat). A characteristic of these repeat expansion diseases is that the culprit DNA sequences progressively increase in length in neurons of the brain as a person ages, a process called “somatic repeat expansion”. Once the repeats reach a certain length, they trigger toxic process(es) that cause the neurons to die. Dr. Wheeler’s lab has been pivotal in demonstrating the role of somatic CAG repeat expansion as a driver of HD and has found that certain proteins that a normally required to “repair” DNA mistakes actually make these disease-associated repeats grow longer. The goal of her work is to turn fundamental genetic observations into therapies that can slow disease or prevent its onset. Dr. Wheeler is the recipient of several awards, including the Huntington’s Disease Society of America Researcher of the Year award and the Hereditary Disease Foundation Leslie Gehry prize for Innovation in Science. 

Jenny Morton

Professor Jenny Morton came from New Zealand to the University of Cambridge, UK when she finished her PhD. A physiologist by training, she was appointed to a University lectureship in the Department of Pharmacology in 1991. She decided to dedicate her research to Huntington’s disease for a ‘couple of years’ – until the gene was cloned and a treatment on the horizon. But the discovery of the gene in 1993 showed that there would be no quick fix and those couple of years turned into a lifetime of research. Work in her lab was dedicated to understanding the mechanisms underlying HD. She has a deep interest in the pathophysiology of HD with particular interest in cognitive decline, sleep and circadian dysfunction, and the molecular mechanisms of CAG repeat instability. An early pioneer in the use of animal models of HD, she made significant contributions to the field for over 30 years and was awarded an ScD from the University of Cambridge for her work. She retired from Cambridge in 2025 and is currently Emeritus Professor of Neurobiology, Cambridge.