MENTAL HEALTH ADVISORY COUNCIL
Reena Kartha
Rare and Orphan/Inherited Metabolic Disorders/Translational Pharmacology
Reena is a molecular pharmacologist at the University of Minnesota Center for Orphan Drug Research interested in biomarker discovery in the area of rare pediatric neurological disorders. Her research also involves the clinical pharmacology and development of drugs used in the treatment of inherited metabolic disorders.
Jana Benesh
Neuroscientist | Clinical Strategist | Rare Disease Patient Advocate
Jana is a Neuroscientist, patient advocate, and clinical development leader with more than 15 years of translational research experience across neurology, psychiatry, and rare disease therapeutic areas. Expertise and focus on rare neurological and neuromuscular diseases. Broad scientific and professional competencies including clinical trial design, innovation, and strategy; patient advocacy strategy and engagement; scientific writing; molecular biology and assay development; data analysis; scientific and medical cross-functional engagement and collaboration with industry professionals, scientists, patients, advocacy groups, and healthcare providers.
Lawrence Merritt
Executive Director, Global Clinical Development at Ultragenyx
Lawerence is an Executive Director of Global Clinical Development at Ultragenyx Pharmaceutical. Trained and board certified in Clinical Biochemical Genetics, Clinical Genetics, and Pediatrics and served as a Clinical Professor at the University of Washington, Department of Pediatrics, Division of Genetic Medicine and at Seattle Children’s Hospital. Served as former Program Director for the Medical Biochemical Genetics Fellowship program at the University of Washington. Clinical interests and clinical research focused on evaluating, diagnosing, and treating patients with Inborn Errors of Metabolism with focus on Urea Cycle Disorders and Fatty Acid Oxidation Disorders in Newborn Screening.
Elissa Epel, PhD
Professor, Neuroscience Psychologist | UCSF
Elissa Epel, Ph.D., a distinguished expert in stress, well-being, and optimal aging, serves as a Professor in the Department of Psychiatry & Behavioral Sciences at (UCSF). As Vice Chair of Psychology, she directs the UCSF Aging Metabolism Emotions Center. A best-selling author of "The Telomere Effect" and "The Stress Prescription," her research delves into the impact of psychosocial and behavioral factors on aging. Dr. Epel's focus on climate wellness underscores her commitment to holistic health approaches.
Al Freedman, PhD
Psychologist | Freedman Counseling Associates
Dr. Al Freedman, a licensed psychologist, has provided child, adolescent, adult and family psychotherapy, as well as consultation to schools, health care organizations, rare disease advocacy organizations, and biopharmaceutical companies for over 20 years. He specializes in working with children, adolescents, and families, and has a special interest in families affected by disability and complex medical conditions. Dr. Freedman has written and spoken widely on the topic of caring for children with special health care and educational needs.
Sandra Mulhinch MSc, PhD
Psychologist, Associate Director | ICON Plc
Sandra Mulhinch, MSc, MSc, PhD is a clinical psychologist and clinical research professional. Sandra has extensive experience in clinical trial operations and delivery across all phases of drug development in both the pharmaceutical and CRO environment. Sandra is enthusiastic about improving patient access through patient-centric protocol design, with a focus on patient engagement, advocacy, and clinical education.
Sandra’s clinical psychology education and training is in psychodynamic psychotherapy, a form of in-depth talk therapy, centered on theories of psychoanalysis. She has a strong interest in treating individuals and their caregivers affected by rare disease.
Lisa Burke
Creator & Presenter | RTL Today
Lisa Toni Burke is a multifaceted talent whose expertise spans presenting, moderating, hosting, and speaking, alongside her roles as a science author, voice-over artist, classically-trained singer, actor, and public-speaking coach. Within the rare disease community, her impact is profound. Through her diverse skill set, she raises awareness, educates, and inspires action. Whether hosting events, lending her voice to awareness campaigns, or using her artistic talents to advocate, Burke plays a pivotal role in amplifying the voices and needs of those affected by rare diseases, driving positive change and support within the community.
Randy Phelps, PhD
Clinical Psychologist, former-CEO | Give-an-Hour
Randy Phelps, Ph.D., a clinical psychologist, is the Chief Executive Officer of Give an Hour. He served on the Give an Hour Advisory Board for over a decade, was a consultant to the GAH Board of Directors in 2017, became GAH’s Vice President of Operations in 2018, and was appointed GAH’s Chief Executive Officer in 2019. Dr. Phelps received his Ph.D. in clinical psychology from the University of Utah in 1981. He is a Fellow of the American Psychological Association, Distinguished Member of the National Academies of Practice, Clinical Member of the American Family Therapy Academy, and recipient of APA’s Karl Heiser Award for advocacy. He has also received an APA Presidential Citation for his national contributions to professional psychology.
Alison Skrinar, MPH
VP Clinical Outcomes/Research/Evaluation | Ultragenyx
Alison Skrinar serves as the Vice President of Clinical Outcomes Research & Evaluation at Ultragenyx Pharmaceutical, located in Novato, California. With a wealth of experience in the pharmaceutical industry, she previously held the position of Director of Clinical Outcomes at Genzyme, and has also worked in various capacities at Enobia Pharma and the Neuromuscular Disease Foundation.
Alison earned her Bachelor of Business Administration (BBA) degree from Emory University and holds a Master of Public Health (MPH) from the University of Alabama. Her dedication to advancing clinical research and evaluating outcomes underscores her commitment to improving patient care and outcomes in the pharmaceutical sector.
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