PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created at Vanderbilt University. PWSA | USA will now implement the BOSS curriculum, providing tailored social groups to teens and adults with PWS, empowering them to enhance their social interactions and build meaningful connections.
Prader-Willi syndrome poses various social difficulties, with individuals often expressing a desire for more friendships and a reduction in feelings of loneliness. However, they often encounter challenges in reading others' emotions and intentions, as well as responding to social overtures. Recognizing this need, the BOSS curriculum was developed and has demonstrated remarkable effectiveness in reducing loneliness among teens and young adults with PWS.
The BOSS curriculum equips individuals with PWS with essential skills to interpret facial expressions, tone of voice, and nonverbal cues. Moreover, it empowers them to explore problem-solving strategies, establish new friendships both within the group and in real-world settings, and focus on personal growth. Those who have completed the BOSS program, along with their parents, have reported improved abilities to initiate social interactions and a decrease in behavioral problems by the end of the 10-week program.
"We are excited to partner with FPWR in introducing the BOSS Social Skills Curriculum to our community,” states Stacy Ward, Interim CEO for PWSA | USA. “People with Prader-Willi syndrome often face unique social challenges, and the BOSS curriculum addresses these specific needs, enabling them to develop crucial social skills and establish fulfilling connections. This collaboration is a significant stride forward in our mission to enhance the lives of individuals with PWS."
“FPWR is dedicated to advancing research and improving the lives of individuals with PWS,” stated Susan Hedstrom, Executive Director, FPWR. “We are proud to have funded the development of the BOSS curriculum and see this collaboration as an opportunity to ensure its impactful implementation by PWSA | USA. Together, we can empower teens and adults with PWS to cultivate vital social skills and thrive in their communities."
PWSA | USA will immediately commence the implementation of the BOSS Social Skills Curriculum, offering engaging social groups that provide a safe and supportive environment for teens and adults with PWS to enhance their social interactions and establish meaningful connections.
The group will meet Monday, Tuesday, and Friday at 6:00 PM EST beginning on October 9th. Interested in participating in a group? Please email info@pwsausa.org.
This collaboration between PWSA | USA and FPWR marks a significant milestone in improving the lives of individuals with PWS, equipping them with the tools to navigate social challenges and foster positive relationships. By investing in innovative initiatives like the BOSS - Curriculum, both organizations demonstrate their unwavering commitment to supporting the PWS community and promoting their overall well-being.
For more information about PWSA | USA and their programs, please visit www.pwsausa.org. To learn more about FPWR and their ongoing efforts, please visit www.fpwr.org.
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About PWSA | USA
PWSA | USA is a national organization dedicated to supporting individuals and families affected by Prader-Willi Syndrome. Through advocacy, education, research, and support, PWSA | USA strives to improve the quality of life for those impacted by this complex genetic disorder.
About FPWR
FPWR is a global nonprofit organization focused on funding research, advancing scientific understanding, and improving the lives of individuals with Prader-Willi syndrome. By supporting innovative research and forging strategic partnerships, FPWR seeks to find treatments and ultimately a cure for PWS.
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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.