Patient Advisory Board
About Us: Patient Advisory Board
Amelie Gubitz, PhD | Co-Chair
Amelie Gubitz serves as a Program Director at the National Institute of Neurological Disorders and Stroke (NINDS), USA. In this role she oversees a grant portfolio that covers basic, translational and clinical research on several neuromuscular diseases, including amyotrophic lateral sclerosis, X-linked spinal and bulbar muscular atrophy and hereditary spastic paraplegia. Amelie earned a Ph.D. in pharmacology from the University of Cambridge, UK, and then completed a Wellcome Trust Fellowship at Harvard Medical School in circadian biology. Subsequently, she worked as a Senior Scientist in the target discovery group for neuropathic pain at Parke Davis, UK. Prior to joining the NINDS in 2006, she studied the molecular pathogenesis of spinal muscular atrophy (SMA) in the laboratory of Dr. Gideon Dreyfuss at the University of Pennsylvania. Amelie is a Type III SMA patient. She has two siblings, one with Type II SMA and one who is unaffected.
Srin Madipalli | Co-Chair
Srin Madipalli is a software and technology entrepreneur from London, UK. Mr. Madipalli holds an undergraduate degree in Genetics from Kings College, University of London and an MBA from St Peter’s College, University of Oxford. As an undergraduate, he was awarded the Jelf Medal for graduating first in his class.
Following his undergraduate studies, Mr. Madipalli practiced as a lawyer at Herbert Smith Freehills, a leading international law firm, where he advised high profile institutional investors and private equity firms on commercial transactions in the real estate and infrastructure sectors.
Mr. Madipalli was born with spinal muscular atrophy, and regularly acts as an advocate to encourage and facilitate educational and employment opportunities for the disabled. He is Co-Founder and a Director of Disability Horizons, a social enterprise that recently received funding from the Skoll Foundation and helps disabled people explore and pursue travel and aspirational lifestyle opportunities. Leading by example, he has travelled the world, undertaking numerous adventures, including scuba diving in Bali, camping safaris in Kruger National Park, and flying a plane over Stonehenge.
Mr. Madipalli is also a member of the SMA Foundation’s Audit Committee, advising on legal and patient matters.
Dianna Hu is a 2015 graduate of Harvard University, and is currently a full-time software engineer at Google. Battling with the adversities of SMA in day-to-day life, Ms. Hu is deeply committed to the search for a cure. As a member of the Foundation’s Patient Advisory Board, she hopes that her input can support companies and clinical trials dedicated to improving the quality of life for individuals like her, living with SMA. In her free time, Ms. Hu enjoys fueling her chess addiction and consuming absurd quantities of Oolong tea.
Tim Reilly, PhD
Dr. Tim Reilly and his wife, Gretchen, are parents to 3 children including their oldest son, Matthew (age 11), who has Type II SMA. He is Co-founder and Chief Scientific Officer of SMART (Spinal Muscular Atrophy Research Team - www.smarthope.com), a not-for-profit organization started in 2009 that funds novel, direct-to-investigator research aimed at finding a cure for SMA and related neuromuscular diseases.
Professionally, Dr. Reilly is Executive Director and Head of Exploratory Development for Immuno-Oncology at Bristol-Myers Squibb Company (BMS). In that role, Tim is responsible for establishment of the overall vision, strategic and operational plans and leadership of matrix teams overseeing all nonclinical and clinical aspects of an exploratory development portfolio of programs that harness the body’s own immune system to combat cancer. He has a proven track record of 13 years in pharmaceutical research and development, including overall strategic and tactical leadership for cross-disciplinary exploratory development teams for both small molecules and protein/biological therapeutics across a wide range of disease areas that include Oncology, Immunoscience, Genetically-Defined and Metabolic Diseases. Prior to joining BMS, Tim was a research fellow at the National Institutes of Health in Bethesda, Maryland. He obtained his undergraduate degree from the University of Notre Dame, his doctoral training in Pharmaceutical Sciences from Wayne State University, and is a board-certified Diplomate of the American Board of Toxicology.
Sethu Sankaranarayanan, PhD
Dr. Sethu Sankaranarayanan is currently Director of Biology at Annexon Biosciences, investigating innate immune mechanisms in neurodegenerative diseases. He received his PhD in Neuroscience from Washington State University. His post-doctoral work focused on mechanisms of neurotransmitter release and recycling at the Max-Planck Institute of Medical Research at Germany and The Weill Medical College of Cornell University. He has extensive drug discovery experience in small molecule and antibody therapeutics for Alzheimer’s disease at Merck and Bristol-Myers Squibb. As a parent of a child with Type II SMA, Dr. Sankaranarayanan understands the needs, issues and challenges faced by families. He actively follows ongoing clinical trials for SMA therapies from both a personal and scientific perspective.
Inge Schwersenz, MD
Inge Schwersenz studied Medicine at the Medical School of Hannover. She later completed specialist training in Anaesthesiology, and subsequently worked in the field for several years. After the birth of her second child with SMA, she turned to teaching and training medical personnel at a professional school, before retiring in 2013. In 2001, Dr. Schwersenz founded, together with her husband, the German “Eine Therapie für SMA” as a part of the Deutsche Gesellschaft für Muskelkranke (DGM). In 2007 they founded, together with other European patient groups, SMA Europe.
Ann Marie Yamada, PhD
Ann Marie Yamada, PhD, is an associate professor of social work at the University of Southern California. At USC she serves as a member of the Institutional Review Board, is an affiliate of the Saks Center on Mental Health Law, Policy, and Ethics, and is a research fellow at the Center for Religion and Civic Culture and Ethics. Her research interests currently focus on enhancing the cultural relevance of services for adults and older adults living with psychiatric disabilities. Her research involves collaboration with public-sector mental health centers to develop or adapt services within culturally diverse, underserved, urban communities. Dr. Yamada teaches research methods in the Master of Social Work program, cultural research methods in the doctoral program, and mentors students with interests in Asian-American culture, the role of spirituality in mental health, and cultural diverse community mental health services. In 2005, she received the USC Mellon Award for Excellence in Mentoring Graduate Students.
Dr. Yamada completed her PhD in Clinical Psychology from the University of Hawai‘i at Mānoa and earned a PhD certificate in intercultural studies at the East-West Center in Honolulu. Her internship focused largely on working with patients admitted for acute rehabilitation services at the University of Texas Medical Branch at Galveston. Prior to her current position at USC she conducted federally funded postdoctoral research at the University of California, San Diego, with the Department of Veteran Affairs, further developing her interests in severe psychiatric disabilities as experienced among diverse civilian and veteran populations.
Nicole Gusset, PhD
Nicole Gusset and her husband Dr Markus Gusset are parents of two daughters. Their first-born daughter Victoria was diagnosed with SMA Type II in 2011. As a result of this, in 2012, Dr Gusset founded the patient organisation SMA Schweiz (www.sma-schweiz.ch) of which she is the president. Her main goals are twofold: to have well-informed patients with a strong common voice through providing up-to-date scientific achievements and to build a trustful relationship with scientists, pharmaceutical companies, regulators, payers, clinicians and patient groups to develop the best potential medicine for SMA patients by offering patients’ input to different stakeholders. Nicole Gusset is representing SMA Schweiz on the board of SMA Europe.
Dr Gusset earned her PhD in behavioural ecology in Berlin, Germany and the Serengeti, Tanzania. She then worked for several years at the Swiss Federal Veterinary Office as a scientific officer and deputy head of the unit dealing with bilateral agreements with the European Union. Currently, Dr Gusset is employed at the University of Zurich as a scientific project manager.
Hassan Sobati, PhD
Dr. Hassan Sobati’s only child has SMA Type II. He is a Trustee of SMA Support UK and a Director of SMA Europe. Hassan’s vision of SMA research as an ex-scientist is that while the future is beginning to look bright for the newly diagnosed; there is an obvious need for much more research in basic science in order to give the post symptomatic patients a better chance of recovery. One can play a role in helping efforts to find a cure for SMA and improve the standard of care which matters most in the absence of a cure. Hassan has a PhD in Molecular Biology from King’s college of London. His microbial research in 90‘s focused on gene cloning techniques. Hassan is lawyer and linguist based in London. He is also the director of a regulatory organization in the UK.
Corey Ruhno is a graduate research associate in the lab of Dr. Arthur Burghes at The Ohio State University. He received his undergraduate degree from Michigan State University, where he majored in biochemistry and molecular biology. During that time, he worked two summers for the Dow Chemical Company, located near his hometown in mid-Michigan. In Corey’s current research projects, he is attempting to further uncover the molecular basis of SMA, as well as finding possible therapeutic targets. He is the bioinformatics specialist in the lab, and is responsible for analyzing large amounts of RNA- and DNA-sequencing data. Corey has type II SMA.
Annette Reed, RN
Annette Reed is a Registered Nurse who graduated from The Ohio State University with a Bachelor of Science in Nursing (BSN). She has worked in orthopedics, general medical surgical units, emergency room, pediatrics, labor & delivery, postpartum, and NICU. Annette and her husband Carl have two children, Kenny who is 25 and Madison who is 19. Madison has SMA Type I and Kenny is a carrier. Madison was diagnosed at 8 months old, although she presented symptoms at birth and in utero. Annette currently is Madison’s caretaker 24/7.
In 1998, Annette and her husband started The Miracle for Madison and Friends Fund at The Ohio State University to raise awareness and money for research locally to provide support to other SMA families. They also created the official SMA Awareness Ribbon. Annette is looking forward to expanding her outreach and sharing her knowledge with other SMA families through being a part of the Patient Advisory Board at the SMA Foundation.
Audrey Winkelsas is a doctoral student in the National Institutes of Health Oxford-Cambridge Scholars Program. She graduated summa cum laude from the University of Miami in 2015 with a B.S. in Biochemistry. During her undergraduate career, Audrey was involved in research at the Miami Project to Cure Paralysis and The Scripps Research Institute. Her academic achievements earned her induction into Phi Beta Kappa, an NSF Graduate Research Fellowship, and the David G. Anderson Prize, presented annually to an outstanding graduating senior in biochemistry at the University of Miami. In her doctoral work, she is investigating RNA-based therapeutics for SMA. Audrey has Type II SMA.