SAVE THE DATE – APRIL 27, 2022
Time: TBD
Registration Link Coming Soon!
Advocacy in Action presents… Engaging with the FDA: Opportunities and Boundaries
As our community continues down the ever-evolving road of drug trials to enhance the lives of those who have PWS, PWSA | USA would like you to join us as we bring you a live webinar featuring two speakers direct from the US Food and Drug Administration!
Now more than ever, it’s essential that our community understands the most effective way to have our collective voices heard by those who can directly affect change. This informative webinar will discuss topics such as:
- Understanding patient engagement at the FDA
- Patient voice
- FDA Patient Listening
- Submitting questions & meeting requests
- Patient focused drug development
- CDER Listening Sessions
In addition, we will feature a 15-minute Q&A at the end of the presentation where attendees will have the opportunity to ask questions directly to our presenters from the FDA. It’s important to note that the Q&A portion will NOT speak to specific information surrounding any drugs seeking FDA approval, but it will provide members of our community with the opportunity to learn how to best engage with the FDA. PWSA | USA is thrilled we can provide this unique opportunity for members of the PWS community and look forward to an exciting and informative presentation.
SPEAKERS:
Susan Chittooran, MSW
FDA Patient Listening Session Program Manager
Office of Patient Affairs
Office of the Commissioner
U.S. Food and Drug Administration
AND
Sadhna Khatri, Pharm.D., MPH, MS, MEd
CDR, U.S. Public Health Service
Supervisory Associate Director -Engagement Team
Professional Affairs and Stakeholder Engagement | Office of Center Director
Center for Drug Evaluation and Research | Food and Drug Administration (CDER)
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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.