On Monday, October 16 & 17, Harmony Biosciences hosted an annual all-employee meeting in Philadelphia, Pennsylvania. Charles Conway Jr. and Jennifer Garzia, PWS parents to Angelica (3) and Rocco (19), were invited to participate in a panel discussion: Delayed, but not Denied: Perspectives on Caregiving. The title and theme of the talk, Delayed, but not Denied, was inspired by Charles’ vision for Angelica’s future.
“Advocating is a very powerful and necessary initiative to PWS awareness, education, and treatment development, whether with local, state, and federal agencies (including pharmaceutical companies). This event provided me the opportunity to share my story and challenges to an organization who assisted in turning our PWS community’s dreams to a reality. Remember, our loved ones abilities are ‘Delayed not Denied’ as long as you have the ‘Hope’ of a mustard seed!!!!!” said Charles.
Charles also shared how his work with PWSA | USA’s Advocacy Committee and as a parent mentor has allowed him to help not only his daughter, but other PWS families in a number of ways. It is speaking opportunities like these that allow for greater understanding of PWS as a multi-faceted disease and building empathy, especially for pharmaceutical companies and their employees.
During the panel discussion, Jen discussed daily life with Rocco and the ups and downs of PWS, likening her experience as a parent and caregiver to “riding a rollercoaster.” Jen shared her hopes for Rocco and all people with PWS are to feel the satisfaction of their dreams being realized.
“I am thankful for the opportunity to share Rocco’s story with Harmony. Rocco’s life journey is unique and full of difficult twists and turns, but with the help of so many talented individuals, each day we are filled with more hope that helps us stay on course. I am more optimistic than ever that as impacted families and medical communities listen to each other and work together, Rocco and his peers will be provided a more peaceful and manageable way to live with Prader-Willi Syndrome,” said Jennifer.
Harmony Biosciences recently announced their upcoming Phase 3 registrational for TEMPO, a randomized, double-blind, placebo-controlled, multicenter, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS, ages ≥ 6 years. This study is expected to be initiated in Q4 2023. Learn more by clicking here.
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.