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HD InsightsIn Brief: Meet the Scholars

Shoulson Scholar Fund recognizes outstanding investigators for promising HD research.

In honor of the Huntington Study Group’s (HSG’s) founder, Ira Shoulson, the HSG established in 2015 the Shoulson Scholar Fund. The fund recognizes outstanding junior investigators for promising research in Huntington disease. The award supports recipients’ travel to the HSG meeting.

Nancy Downing

Nancy Downing, associate professor of forensic health care at Texas A&M University and commissioner of the Texas Forensic Science Commission, was the first recipient of a Shoulson Scholar Award in 2015.

HD Insights: How did your receipt of a Shoulson Scholar Award help you in your career?

Nancy: Receipt of a Shoulson Scholar Award was a great honor because it recognized the contributions I had made to HD research. It is important as a researcher to demonstrate impact of your research beyond your academic institution. Although I did not continue with HD research, I believe I helped bring attention to research on lifestyle factors and quality of life in HD. This research is being continued by others with whom I collaborated, and I’m confident they will continue to make progress in those areas.

HD Insights: Please describe the research that you conducted in HD.

Nancy: I was involved with Exercise-HD, a trial to determine if exercise may slow the progression of brain degeneration and motor impairment caused by HD. Areas of the brain most affected by HD (striatum and white matter) have been shown to be responsive to exercise.

HD Insights: Please describe the work you are doing now in forensic health care.

Nancy: My research focuses on improving health outcomes for persons impacted by interpersonal violence. I currently have five funded projects, ranging from a National Institute of Justice-funded study examining use of alternate light sources to visualize bruises in different skin colors to a study investigating how emergency contraception impacts fear and extinction learning associated with development of PTSD. I am also a part of a team on a Health Resources and Administration (HRSA) federal grant to increase the forensic nurse workforce in rural and underserved areas of Texas, and a HRSA grant examining rural and non-rural differences in prevalence and presentation of intimate partner violence nationwide. My primary research aim is identifying risk factors for PTSD following sexual assault and how forensic nurses can integrate preventive strategies into medical forensic examinations to mitigate and/or prevent PTSD following sexual assault.

HD Insights: How did your start in HD research help to prepare you for this work?

Nancy: My start in in HD research prepared me for my work in interpersonal violence in many ways. Although interpersonal violence sounds like a very different area of research than HD, there are important factors in common. As a former medical-psychiatric nurse, I learned early in my career about the intersection of physical and mental health. Both HD and interpersonal violence involve physical experiences with enormous impacts on mental health. My dissertation research involved examining how couples coped with early functional changes associated with the HD gene mutation. Coping after sexual assault is important in sexual assault, and impacts development of PTSD. Working on two large NIH-funded HD studies (PREDICT-HD and HD-QLife), I learned many research skills that prepared me for my current work.

The HD research in which I was involved was interdisciplinary, and included large multi-site research teams. This type of research collaboration is essential to success these days. Collaboration with psychologists, psychiatrists, biostatisticians, and nurse researchers in HD has translated well into my current practice, which also involves working closely with those disciplines. My involvement in HD studies prepared me to work with large data sets, to be involved in measurement development and validation, and to have interdisciplinary discussions about data analysis and interpretation. These are essential tools that have prepared me well for my current program of research. I’m very grateful to HSG and the HD researchers who contributed to my development as a researcher.


Nora Fritz

Nora Fritz, assistant professor of physical therapy at Wayne State University, received a Shoulson Scholar Award in 2016.

HD Insights: How did your receipt of a Shoulson Scholar Award help you in your career?

Nora: The Shoulson Scholar Award provided support for presenting my work early in my career. This recognition has contributed to ongoing collaborations within HSG, including working with an international group of rehabilitation researchers to develop guidelines for exercise in HD, and the opportunity to present our ongoing work at HSG 2018.

HD Insights: Please describe your current research.

Nora: In addition to many other projects, I am currently leading an international team of rehabilitation researchers in the development of a formal Clinical Guideline for Exercise in Huntington’s Disease. We have received support from the HSG, the European Huntington’s Disease Network, and The Griffin Foundation for this effort. To date, we have completed a systematic review of the literature, drafted the clinical guidelines, met with stakeholders for review and revisions, and put the guidelines forward for public comment. Presently, the guidelines are being reviewed by the American Academy of Neurology and the Academy of Neurologic Physical Therapy for possible endorsement. We anticipate submission of these Clinical Guidelines for Exercise in Huntington’s Disease in the coming months. These guidelines will provide evidence-based recommendations for healthcare providers and persons with HD.


Filipe Rodrigues

Filipe Rodrigues, clinical research fellow at UCL Huntington’s Disease Centre, received a Shoulson Scholar Award in 2017.

HD Insights: How did your receipt of a Shoulson Scholar Award help you in your career?

Filipe: Since the presentation of these two posters at the HSG 2017 meeting in Denver, Colorado, we have been working hard to produce relevant information to help optimize clinical trials in Huntington’s disease. The work on cerebrospinal fluid dynamics has been published in the European Journal of Neuroscience1, and the Enroll-HD analysis on Parkinsonism & Related Disorders2.

Last year, we had the opportunity to present our work on biofluid biomarkers from a London-based cohort of 80 participants at the HSG 2018 meeting in Houston, Texas, where we showed that mutant cerebrospinal huntingtin, and blood and cerebrospinal neurofilament light can be a helpful tool to empower clinical trials3. At the moment we are working on longitudinal analyses from the same cohort, which we hope to present at HSG 2019.

1Rodrigues, F.B., L.M. Byrne, E. De Vita, E.B. Johnson, N.Z. Hobbs, J.S. Thornton, R.I. Scahill, and E.J. Wild (2019) Cerebrospinal fluid flow dynamics in Huntington’s disease evaluated by phase contrast MRI. Eur J Neurosci. [Epub ahead of print]

2Barkhuizen, M. / F.B. Rodrigues, D.G. Anderson, B. Winkens, E.J. Wild, B.W. Kramer, and A.W.D. Gavilanes (2018) Perinatal insults and neurodevelopmental disorders may impact Huntington’s disease age of diagnosis. Parkinsonism Relat Disord 55: 55-60.

3Byrne, L.M. / F.B. Rodrigues, E.B. Johnson, P.A. Wijeratne, E. De Vita, D.C. Alexander, G. Palermo, C. Czech, S. Schobel, R.I. Scahill, A. Heslegrave, H. Zetterberg, and E.J. Wild (2018) Evaluation of mutant huntingtin and neurofilament proteins as potential markers in Huntington’s disease. Sci Transl Med 10(458).

About HD Insights

Our mission is to promote, disseminate, and facilitate research on Huntington’s disease. To fulfill this mission, we are guided by an outstanding editorial board that includes representatives from three continents, academia, industry, and the HD community.