Contributed by PWSA | USA CEO Stacy Ward, MS, BCBA
When you are raising or caring for someone with PWS the journey can feel overwhelming. What makes it a little lighter is knowing there are incredible clinicians, researchers, and specialists who have chosen to walk this road with us.
At the heart of PWSA | USA’s mission stands a remarkable group of clinicians and scientists who have dedicated their careers to caring for individuals with Prader-Willi syndrome. These individuals are more than medical experts – they are trusted partners.
Their expertise has shaped the standards of care in the PWS community, guiding families and providers with clarity, compassion, and a steadfast commitment to improving lives. Each member, current and past, of our Clinical & Scientific Advisory Board (CSAB) brings not only knowledge, but also decades of experience in listening, learning, and advocating for individuals with PWS.
In addition to their clinical care and advisory work, many of the clinicians in the PWS community also serve as primary investigators on clinical trials. This role requires an extraordinary level of commitment – countless additional hours spent overseeing trial operations, analyzing data, and navigating the complex regulatory landscape. Their willingness to take on this demanding work speaks to their dedication not only to science but also to families and individuals living with PWS. Every study they lead brings us closer to treatments and interventions that can change lives, and the sacrifices they make to advance these trials demonstrate a remarkable devotion to driving progress for the PWS community.
The following clinicians and scientists have devoted their careers to advancing care, research, and support for the PWS community while strengthening the mission of PWSA | USA.
Jennifer Miller, MD – Endocrinologist
Deepan Singh, MD, FAPA- Psychiatrist
Ann Scheimann, MD, MBA – Gastroenterologist
David Agarwal, MD – Vascular and Interventional Radiologist
Jessica Duis, MD, MSc – Pediatric Geneticist / Special Care Pediatrician
Jan Forster, MD – Psychiatrist
Moris Angulo, MD – Endocrinologist / Geneticist
Ann Manzardo, PhD, MS – Behavioral Pharmacologist
Merlin G. Butler, MD, PhD, FFACMG – Geneticist / Cytogeneticist
Greg Cherpes, MD – Psychiatrist
Dan Driscoll, MD, PhD – Geneticist
Linda Gourash, MD – Pediatrician
Janet Li, MD – Urogynecology
James Loker, MD – Pediatric Cardiologist
Shawn McCandless, MD – Geneticist
Matt Rivard, MD, MBA, FACS – General Surgeon
Harold van Bosse, MD, FAAOS – Orthopedic Surgeon
Amee Revana, DO, FAASM – Pediatrician / Pulmonologist
Daniela Rubin, PhD, FACSM – Exercise Physiology Scientist
Parisa Salehi, MD – Endocrinologist
Althea Shelton, MD, MPH – Neurologist
Olivia Veatch, PHD – Assistant Professor
Barbara Whitman, PhD – Professor of Pediatrics
Waheeda Hossain, MD, MPH – Psychiatry and Behavioral Sciences
Karen Vogt, MD – Endocrinologist
Mary Cataletto, MD – Pulmonologist
Anastasia Dimtropoulos, Phd – Professor of Psychology
Andrea Haqq, MD, MHS, FRCP ( C ), FAAP – Endocrinologist
Susan Meyers, MD – Endocrinology
Robert Nicholls, DPhil – Professor of Genetics
Stefan Stamm, PhD – Professor
Joseph Donnelly, EdD, MS – Professor, Physical Activity & Weight Management
Roxanne Gross, CCC-SLP – Assistant Professor
Todd Porter, MD, MSPH – Pediatrician
What makes their impact truly special isn’t just the science they move forward, but the trust they’ve earned along the way. Families across the country know they can count on these clinicians for answers, guidance, and real support. Their dedication has helped build a sense of confidence and comfort that continues to hold the PWS community together.
We’re incredibly thankful for the time and energy these clinicians and researchers pour into their work, whether they’re in a lab, a clinic, a hospital, or sitting with a family, helping them navigate the unknown. Thanks to their commitment, progress isn’t just a goal. It’s something we see happening every day.
As we recognize their work, we’re celebrating more than just their professional achievements. We’re honoring the kindness, generosity, and heart they bring to everything they do. Their dedication has shaped the future of PWS care, and their impact will continue to inspire hope for years to come.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.