PWS Community Day in North Carolina
Families in the PWS community are invited to attend a PWS Community Day on Rare Disease Day (Saturday, February 28th) in Durham, NC! This event, hosted by Soleno Therapeutics in collaboration with PWSA | USA and FPWR, will take place at The Museum of Life and Science (433 W. Murray Avenue, Durham, NC 27704) from 1:00 – 4:00 PM EST. Attendees will enjoy a day of connection, care, and fun. Food will NOT be provided during this event, but please feel free to pack a snack or lunch from home. A separate, secure space to dine will be available.
REGISTER TO ATTEND THE PWS COMMUNITY DAY
What to Expect
1:00–1:15 pm Welcome & Open Remarks (Mercury Room)
1:15–1:30 pm Caregiver Networking: A supportive space to connect with other caregivers, talk, learn from each other, and engage with the PWS community in your area.
Fun Zone*: Solar System Adventures! Engaging supervised activities for individuals with PWS and their siblings.
1:30–2:15 pm Caregiver Session: Self-care activity and discussion. A session focused on the importance of self-care, which will provide conversation and tools to help you pause, recharge, and apply simple self-care tips in your daily life.
Fun Zone*: Solar System Adventures continues! Engaging supervised activities for individuals with PWS and their siblings.
2:15–2:45 pm Break: Opportunity for families to check in.
2:45–3:30 pm Caregiver Session: Hear from a doctor and caregiver and learn more about a treatment option.
Fun Zone*: Solar System Adventures continues! Engaging supervised activities for individuals with PWS and their siblings.
3:30–4:00 pm Closing: Gather for final remarks and goodbyes (Mercury Room)
* The Fun Zone will be a dedicated space with arts, crafts, and activities for those living with PWS and their siblings. It will include movement, games, and laughter with peers. 2:1 supervision will be provided by Corporate Kids Events’ qualified and trained staff.
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.