submitted by Amy McDougall, mom to Noelle (23, living with PWS)
For years, I personally found it difficult to consider my own self-care. As a caregiver in a household that included PWS and other medical needs, I was focused on meeting my family’s needs, while ignoring my husband’s encouragement to care for myself. When I did eventually acknowledge the wisdom of his words, I discovered a love of hiking, with the solitary time in nature serving to both decompress and recharge me. When I developed a friendship with another PWS mom who became my “hiking buddy”, I discovered that having a connection with someone who understands this life I live made my expeditions even more of a respite. However, when I decided to ask a group of PWS moms (many of whom I only knew on Facebook) if anyone was interested in getting together for a hiking weekend, I had no concept of what would develop.
“I went looking for a hike through the woods, I came back with a whole new community of moms who get it!” -2025 attendee
There is a wealth of research about the benefits for our mental and physical health related to time in nature and social connection, including decreasing feelings of social isolation, promoting relaxation, and enhancing feelings of self-worth and well-being. Respite in nature and community building are the foundation of the PWS Moms’ Hiking Weekends. I describe them as a “choose your own adventure”, as essentially the only planned events are group dinners. Aside from that, everyone has the ability to decide on where they would like to hike, how strenuous they would like that hike to be, and when they would like to hit the trail. Suggestions for hikes at varying levels are shared and then the collaboration begins, talking logistics and breaking into smaller groups.
“Coming from out of the area and not knowing anyone, I wasn’t really sure what to expect. But knowing other PWS moms and how we are all warriors fighting for our children, I expected this group would be strong, determined, and resourceful. Meeting and spending time with other moms who face similar challenges and concerns in a space where we can open up, relax and also challenge ourselves, was not only cathartic, but also inspirational. I am so grateful for the opportunity to participate in the weekend, enjoy the outdoors and meet and learn from some truly incredible PWS mom warriors.” -2025 attendee
It’s not a simple thing to take a few days away from your family when you’re a PWS mom. There is so much planning and organization that needs to be invested into ensuring that things go as smoothly as possible for your child while you’re gone. So much anxiety (and unfortunately a degree of guilt) about not being readily accessible. It is difficult to actually allow yourself to relax, while also taking a chance on building relationships with other moms who were only a name on a Facebook group until you walked through the door of a shared house. When surveying the group after the event, however, the recurring themes have consistently been about feeling accepted, understood, and refreshed.
“I wasn’t sure what to expect from a weekend away with moms I’d never met, but from the moment I arrived, I felt understood in a way I hadn’t in a long time. We shared our stories, our experiences, our laughter, and our hope. The mountains, the conversations, and the community reminded me that I’m not alone on this rare disease journey. I left the retreat feeling lighter, stronger, and deeply grateful.” -2025 attendee
The response to the simple question “do you want to go on a hike with me?” has been beyond anything I would have imagined. The group of 13 moms in 2024 grew into a group of 26 in 2025. There will be three hiking weekends in 2026, scattered across the country. If you are a PWS mom and would like to learn more about an event (including supports being offered to help make the events more accessible), please email pwshikingmom@gmail.com or join the “PWS Moms’ Hiking Weekend” group on Facebook.
“I am so grateful that I was able to escape everyday reality and attend the PWS mom’s hiking weekend. To share space with women walking the PWS path of all stages and ages was a privilege I will never take for granted. I arrived stressed and nervous to both leave home and be somewhere new. I left feeling both lighter and fulfilled. It was the perfect blend of movement and relaxation, listening and being heard, adventure and comfort. I took home with me core memories like the smell of pine on the trails, nighttime stargazing by the fire, and soaking up conversation in the hot tub that will sustain me on harder days. My overall feeling as I left the retreat was, I am not alone. This is an incredible feeling, and I want others to feel the same way. I highly recommend a hiking weekend with fellow PWS moms!” -2025 attendee
The PWS Moms’ Hiking Series for 2026 includes the following locations:
~Adirondacks (Old Forge, NY); June 5-7
~Glacier National Park (Montana); August 14-17
~Smoky Mountains (Gatlinburg, TN); October 9-12
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.