PWSA | USA is excited to celebrate a powerful new commitment from Soleno Therapeutics, a company already making history in the Prader-Willi syndrome (PWS) community. Following the FDA approval of VYKAT™ XR (diazoxide choline extended-release tablets), the first-ever treatment for hyperphagia in PWS, Soleno has announced plans to invest up to $5 million in grant funding to support innovative genetic research aimed at identifying a potential cure.
This investment reflects a bold and hopeful vision for the future of PWS research. Over the next year, Soleno says it will provide initial grant funding to advance the most promising scientific approaches. The company anticipates further investment will be needed to help bring these advances closer to the clinic.
“Soleno’s commitment to the PWS community is nothing short of inspiring,” said Stacy Ward, CEO of PWSA | USA. “This research has the potential to change the future for individuals and families affected by PWS. We can’t thank them enough for their efforts to support our loved ones.”
Below is the full announcement from Soleno Therapeutics:
Soleno Therapeutics to Invest in Research with Goal of Identifying a Cure for Prader-Willi Syndrome (PWS)
Recently, Dr. Anish Bhatnagar, Soleno’s CEO and Chairman announced the company’s intention to provide up to $5M of grant funding directed towards the most promising genetic approaches to potentially cure PWS.
The initial grant funding will be provided over the next year with the understanding that further funding will be required to advance promising approaches towards the clinic.
The effort will be led by Dr. Neil Cowen, Soleno’s Senior Vice President for Drug Development, who will assemble a world-class advisory board to inform decisions about the most promising approaches for the initial grants as well as the identification of those that merit subsequent and more significant investment.
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.
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.
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.
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.
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.