October 1-4, 2025, PWSA Egypt and the Middle East held their first ever PWS event in the heart of Egypt. Thanks to a grant from Friends of IPWSO, the Nile Hope Workshop and Camp was able to host over 120 people (30 families) from across the Arab world, both virtually and in-person, for an incredibly meaningful experience families can carry with them on their PWS journey. Sarah Kasaby, PWSA | USA’s Information and Referral Specialist and catalyst for the international work PWSA is involved in, was able to travel to the Nile Hope Workshop and Camp to meet the families she has been working with, participate in the events, and enjoy a few days in her home country.
When asked about the event, Sarah replied, “It was magical…It was the first time all these families came together. We’ve been talking for years on WhatsApp, and over the phone, but this is the first time that we all came together and saw each other for the first time, and I think it helped us.”
The final two days were in person, providing families with the space to connect, be in a PWS-friendly space, and deepen relationships they’ve begun virtually.
Virtual Session:
The virtual event on October 1-2, hosted by Kenoz Retaj, an events management company specializing in medical conferences and owned by a PWS Parent, offered incredible opportunities for families to meet PWS specialists and professionals from around the world to learn more about PWS, ask valuable questions about their loved ones, and share their own experiences as parents and caregivers.
Parents and providers enjoyed listening in virtual workshop sessions with the help of professional interpreters. There were many informational sessions given by experts here at PWSA and other medical providers and experts from the PWS community around the world. Topics ranged from behavioral support to medical information. Parents were able to meet professionals and ask important questions.
Two weeks prior, Walaa Ismael, President of PWS EG-ME, had participated in an endocrine conference where she was able to share her story about raising a son with PWS and how growth hormone has benefitted him. Two of the specialists at that conference were so inspired by Walaa and the work being done by PWSA, they asked to be speakers at the Nile Hope Workshop. Participants then got to hear two sessions in Arabic from endocrinologists inspired by the PWS community. Now they know how important growth hormone is and they can help families in the Arab world receive the benefits.
As Sarah stated, “We need providers to learn and to know us.”
Family Camp:
The family camp, October 3-4, was hosted by Wellspring, an organization that specializes in camps for kids with special needs. This part of the event was held at a hotel in a remote area with the purpose of disconnecting from the larger world and focusing the connection on nature and their relationships with each other. There were no restaurants, no way to order food, and the food provided was very PWS-friendly. All of this helped to prevent any tantrums around food.
“We wanted to teach the parents it’s possible to live a healthy life and eat a healthy diet and it’s not the end of the world. It’s actually better,” Sarah stated as she explained the meal plan for the event.
There was a special sibling session during the camp. “This was the first time for the siblings to actually meet and get to know other siblings with Prader-Willi – they know the journey more than anyone and it was amazing for them to connect together.” The kids, with PWS and their siblings, had a blast because they were able to participate in games and competitions and dance by the fire camp.
There was also a separate session for parents to talk about their own mental health and self-care. A therapist came and spoke to the parents alone, encouraging them to not be so hard on themselves and that it is okay to not always be strong. As Sarah explained, “He was telling the parents it’s okay to cry and actually you need to do that, you need to cry and let it all out and have that flexibility in your soul so that you can go on.”
This camp focused on living a healthy, PWS-friendly lifestyle, supporting every member of the family and their emotional well-being, and the importance of family bonding. They offered beautiful, healing activities to promote lifestyle adjustments and nurture those family connections. From contests involving clay, dance parties, pool games, and exploring the emotional aspects of living in a family with PWS, this gathering is likely to have positive effect on these families for years to come.
“I feel like everybody needed this camp. …There were some parts of the camp where we had to sit down and write letters to each other. So, the moms and the dads would write letters for the kids, either PWS kids or their siblings, and the kids, if they can write or if they’re old enough, they wrote letters for their parents. Then they read the letters out loud to each other.I think this part was most healing. It came towards the end and there were a lot of tears, but I felt like we all needed this.”
Continuing the Work:
For Sarah, this event was the culmination of years of hard work, international phone calls and support, and untold hours of creative planning. But this is not the end, only the beginning.
“I feel like the work has just begun. I’m also reaching and trying to see where else we can help. I am hoping that we could continue the collaboration with IPWSO and here at PWSA that maybe we can reach more countries, more people that need.”
In talking of her experience visiting her home country, with the perspective of having lived in the United States for 14 years, some of the challenges families around the world may face with PWS, and the work involved, Sarah stated, “We want to show that if there’s a taboo around this syndrome and about the special needs, it’s important to break that. Once you break that taboo then you will be able to help your child, but sometimes, you’re so stuck in your mind that you don’t want to do anything. We also need to teach that it’s okay, we’ve done it before, and it’s okay. We want to think of the world and try to help as much as we can, if we can.”
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.