Adults with PWS Advisory Board
Leadership From Lived Experience
The Adults with PWS Advisory Board collaborates with PWSA | USA to strengthen support for the adult PWS population.
Who better to guide our mission than those who live it? The Adults with PWS Advisory Board brings firsthand experience and valuable insights, helping PWSA | USA ensure that every voice is heard, every challenge is understood, and every adult with PWS has access to meaningful support.
What We Do
First National Conference
In 2025, we hosted the first-ever conference dedicated to adults with PWS, creating a space for learning, connection, and shared experiences.
Advocacy Work
We raise our voices in national conversations, including events like the DC Fly-In, to ensure the needs of adults with PWS are represented.
Regular Meetups
From virtual gatherings to in-person meetups across the U.S., we build a strong and supportive community for adults with PWS and their families.
Advisory Board Members
SHAWN COOPER
Shawn Cooper lives in Georgia and has been with the Adults with PWS Advisory Board since its earliest days. She excels at socializing with people, animals, and support staff to help manage her PWS. Shawn enjoys walking, playing games on her tablet and phone, and going out on community outings with family and support staff. Known for her outgoing, loving, and caring personality, she emphasizes that people with PWS can survive and thrive, and delivers a powerful message to parents of newly diagnosed children: never give up, listen to outbursts, understand their feelings—people with PWS are gifts to their families and communities.
BROOKE FULLER
Brooke Fuller lives in Michigan and has served on the Adults with PWS Advisory Board since its inception. She excels in self‑advocacy and helps others daily, enjoying coloring, puzzles, bingo, and quality time with her cat, family, and friends. Brooke’s ability to navigate complex systems—especially insurance—makes her particularly effective in supporting the community. She believes that, despite real challenges, individuals with PWS can achieve and live full lives with proper support.
CONOR HEYBACH
Conor Heybach resides in Chicago and has been part of the Adults with PWS Advisory Board since 1996. He is an avid chess player and teacher who also enjoys reading, puzzles, swimming, dancing, and video games. Conor finds joy in time with family and friends, advocating for the PWS and rare‑disease communities, and serving as both board member and inspiration. He encourages families to educate themselves and stay hopeful, reminding them, “there is always a light shining bright at the end of the tunnel”.
KATE KANE
Kate Kane is legally a resident of Maryland and lives in a group home in Wisconsin, where she brings over 15 years of experience to the Adults with PWS Advisory Board . As one of the longest‑serving members of the advisory board, she plays an instrumental role in shaping direction, advocating for adults with PWS, and supporting peer empowerment. Through her consistent dedication, Kate continues to shine a light on the lives and needs of adults living with Prader‑Willi syndrome, helping to guide PWSA | USA’s outreach and community efforts . Her longstanding commitment underscores her deep connection to the PWS community and exemplifies leadership grounded in personal experience and compassion.
VICTOR PENTA
Victor Penta lives in Arizona and has been on the Adults with PWS Advisory Board since 2019. He frequently engages in public speaking and advocacy—lobbying at state capitol and in Washington, D.C.—while also enjoying time drawing and with his niece and nephew. Victor participates in community sports and mentoring programs (basketball, volleyball, bowling) and is known for his caring nature and deep knowledge of college basketball. He emphasizes the importance of understanding hyperphagia and PWS behaviors, reassuring families that with support, individuals with PWS can lead happy, active lives.
ABBOT PHILSON
Abbott Philson lives in Maine and has long contributed leadership, advocacy, and a knack for puzzle‑solving to the Adults with PWS Advisory Board. He enjoys sailing, art, para‑dressage, singing, acting, and self‑advocacy. Abbott underscores that being “high functioning” shapes his unique perspective on PWS and strongly advocates for raising awareness around managing food control and behavioral challenges. His heartfelt message resonates: with hope, a well‑controlled diet, and a supportive environment, individuals with PWS can truly thrive.
TREVOR RYAN
Trevor Ryan lives in Arizona and has been a valued advisory board member for a decade . He brings strengths in research, technology, puzzles, electronics, humor, and a talent for noticing what others miss . Trevor delights in traveling, hiking, swimming, RV camping, amusement parks, being an uncle, and celebrating everyday moments with laughter and creativity . His openness, kindness, and vibrancy are illustrated by his role organizing a high school rock concert and overcoming the challenge of passing the CAHSEE to graduate high school.
JAMES TOWLE
James Towle lives in Massachusetts and was honored to join the Adults with PWS Advisory Board in January 2025 . He plays with the Great Blizzards of Massachusetts, an inclusive ice hockey team, and has shared his inspiring journey during a radio interview about overcoming challenges like low muscle tone to participate in sports. James also helps raise awareness for PWS through his advocacy and storytelling, including reflections during Rare Disease Week where he spoke about the power of sharing his story with lawmakers. Through his involvement in both sports and advocacy, James exemplifies resilience, self-advocacy, and hope within the PWS community.
Special thanks to Acadia for sponsoring the work of this group.
Learn More about Adults with 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.