Medical & Scientific Advisory Council

Sisters’ Hope Foundation is excited to launch the 1st Global ALSP Medical & Scientific Advisory Council.

The SHF Medical & Scientific Advisory Council is comprised of leading experts in the field of neurology, leukodystrophy, movement disorders, dementia, rare disease, and ALSP. The unique skills, background and expertise will augment the SHF Board of Directors and ultimately expand the mission critical work being done for the ALSP community.

The SHF Medical & Scientific Advisory Council will provide scientific review of materials and content to ensure scientific accuracy and ensure materials are pertinent and provide a high impact to the ALSP community prior to public dissemination. The MSAC will offer expertise on scientific projects, statements and publications and provide expertise on the clinical needs of the ALSP patient population.

Sisters’ Hope Foundation is honored and excited to receive guidance and recommendations from the Medical & Scientific Advisory Council.

Are you interested in joining the SHF Medical & Scientific Advisory Council? For more information send a statement of interest to Heidi Edwards, President & Founder, heidi@sistershopefoundation.org.

Chair:

 

Dr. Jennifer Orthmann-Murphy, MD, PhD: University of Pennsylvania, Philadelphia, PA, US

Jennifer Orthmann-Murphy, MD, PhD is an assistant professor of Neurology at the University of Pennsylvania. Dr. Orthmann-Murphy started her lab at Penn in October 2018 to study the role of glial cells in myelin disorders. She also sees patients with multiple sclerosis and leads an ‘Undiagnosed White Matter Disorders’ neurogenetics clinic. She is co-director of the Age-Span Fellowship in Multiple Sclerosis and Neuroinflammatory Disorders, and is associated with the Neuroscience Graduate Group at Penn. Dr. Orthmann-Murphy’s expertise includes Demyelinating Disease Leukodystrophy, Multiple Sclerosis (MS) Myelitis Neurogenetics Neuroinflammatory Disorders, Neuromyelitis Optica (NMO) Spectrum Disorder.

The Orthmann-Murphy Lab studies the role of glial cells in acquired and inherited myelin disorders at the University of Pennsylvania Perelman School of Medicine and was awarded a grant from the National Multiple Sclerosis Society, to support research on astrocyte contributions to cortical remyelination.

Council:

Dr. Caroline Bergner, MD: University Hospital Leipzig, Leipzig, Germany

Caroline Bergner, MD, is a Neurologist in the Leukodystrophy Outpatient Clinic at the University Hospital Leipzig, Leipzig Germany and the Head of basic research laboratory Genetic White Matter Disease Group Clinic of Neurology.

Dr. Roberta LaPiana, MD, PhD: McGill Department of Neurology and Neurosurgery, Montreal, Canada

Roberta LaPiana, MD, PhD is an Assistant Professor in McGill’s Department of Neurology and Neurosurgery. Dr. La Piana has worked on rare genetic white-matter disorders since she was a medical resident in pediatric neurology and psychiatry. Dr. La Piana’s primary area of research examines late-onset undiagnosed forms of leukoencephalopathies. This research focuses on applying MRI pattern-recognition to define and characterize genetic white-matter diseases; to identify genes responsible for new forms of adult hereditary white-matter disorders using next-generation sequencing techniques; and to understand the clinical and MRI overlap between atypical multiple sclerosis and genetic leukoencephalopathies.

 

Dr. Bradley Alan Richie, MD: Family Medicine Physician, California, US

Dr. Brad Richie is currently working as a Medical Advisor for Member Services at Kaiser California. His prior experience was in practice with Kaiser Permanente Southern California. His residency training was in family medicine at Kaiser Permanente in Fontana. During his medical career he worked at the Colton Medical Offices, Riverside Medical Center, taught family medicine residents, and served as a medical quality reviewer. Dr. Richie’s background and interest is in large population, data-based medical research.

Dr. Richie grew up in Southern California, attending high school in Orange County and college at UC Irvine and attended medical school at UC San Francisco.

“The aspects of medical practice I enjoy most are teaching patients and residents and helping diagnose and solve medical problems. My patients' courage in coping with illness is a daily source of inspiration, and I value the long-term relationships we share. I encourage my patients to be closely involved in their medical care.”

 

 

Dr. Beth Rush, PhD, ABPP: Mayo Clinic -Jacksonville, FL, US

Dr. Beth Rush, PhD, ABPP, specializes in clinical psychologist in the Psychiatry and Psychology Departments at the Mayo Clinic in Jacksonville, FL. She graduated from Washington University School of Medicine with her medical degree.

Currently Dr. Rush’s professional memberships include the American Board of Clinical Neuropsychology, Functional Neurological Disorders Society, Department of Psychology & Psychiatry at Mayo School of Graduate Medical Education, Mayo Clinic College of Medicine and Science, Written Examination Item-Writing Committee for the American Board of Clinical Neuropsychology and American Board of Professional Psychology, and the Board of Directors for the American Board of Clinical Neuropsychology.

Her expertise is in acquired brain injury, Neuro-oncology, cognitive impairment in motor neuron disease and patient/family adjustment to neurologic and complex medical illnesses.

 

Dr. Troy Lund, MD, PhD: University of Minnesota Medical Center - Minneapolis, MN, US

Dr. Lund is a Blood and Marrow Transplant Physician at the University of Minnesota Medical Center, Associate Professor at the University of Minnesota Medical School and faculty member in the Division of Pediatric Blood and Marrow Transplantation & Cellular Therapy at the University of Minnesota. Dr. Lund is interested in the use of hematopoietic stem cell transplantation (HSCT). He studies disease onset, disease biomarkers, disease mechanism and how HSCT improves the disease process. His work, both in his research laboratory and with his patients, has created many new treatment approaches, ultimately making HSCT safer and more effective.

Dr. Lund is an international expert on the use of cell and gene therapy for patients with inherited metabolic disorders and lysosomal storage disorders and has been name Minneapolis-St. Paul Top Doctor by Minneapolis-St. Paul Magazine.

 

Dr. Zbigniew K. Wszolek, MD: Mayo Clinic Florida - Jacksonville, FL, US

Dr. Wszolek is a board-certified neurologist, clinical neurophysiologist and electrodiagnostic medicine consultant and a professor of neurology at Mayo Clinic College of Medicine, Jacksonville, FL. His scientific interests are in the field of genetics of Parkinson's disease and related conditions for which he has received many national and international awards.
 
Dr. Wszolek has published extensively in peer-reviewed journals and has spoken at national and international meetings. He holds several patents for discoveries related to the genetics of parkinsonism.
 
In 2012, gene mutations for the colony stimulating factor 1 receptor (CSF1R) gene were identified by Dr. Wszolek based on family cluster studies for hereditary diffuse leukoencephalopathy with spheroids, a condition associated with parkinsonism. His research has produced a significant impact on understanding genetic factors in neurodegenerative conditions.

Dr. Erik H. Middlebrooks, MD: Mayo Clinic Florida – Jacksonville, FL, US

Dr. Erik Middlebrooks is a Professor and Consultant of Neuroradiology and Neurosurgery at Mayo Clinic Florida since 2017. He is currently the Program Director for the Neuroradiology Fellowship and Vice Chair of the Mayo Clinic Enterprise Radiology Research Committee.

Dr. Middlebrooks focuses on advanced neuroimaging including fMRI, Diffusion Imaging, and PET. His clinical and research interests include functional targeting for surgical treatment of movement disorders and functional imaging for brain tumor surgery with language and motor preservation. His research interests also focus on novel methods to improve data quality and processing, which have yielded an international patent for real-time fMRI quality analysis using machine-learning systems.

Dr. Middlebrooks has authored or co-authored over 100 peer-reviewed manuscripts including multiple publications in prestigious journals such as Brain, Journal of Neurosurgery, and American Journal of Neuroradiology. 

Dr. Frederick Bennett, MD: University of Pennsylvania – Philadelphia, PA, US

Frederick "Chris" Bennett, MD, is a Psychiatrist and Assistant Professor of Psychiatry at the University of Pennsylvania.  He is also the head of the Chris Bennett Lab, specializing in microglia research.

Dr. David Lynch, MRCPI, PhD: UCL Institute of Neurology, London, UK

David Lynch, MRCPI, PhD is a consultant neurologist at the National Hospital for Neurology & Neurosurgery and the UCL Institute of Neurology in London. He specializes in neurogenetics, particularly the inherited white matter disorders, like ALSP.

He completed his early medical training in Dublin, before taking up a Leonard Wolfson Clinical Fellowship at the UCL Institute of Neurology. He completed a PhD on the genetics of leukodystrophy, and has authored numerous papers on clinical and genetic aspects of these conditions in adults.

Dr. Lynch is clinical lead for adults at the NHS England Highly Specialist Service for inherited white matter disorders, a specialist multidisciplinary team which provides advice on the diagnosis and management of these rare conditions.