Imagine navigating the challenges of a rare diagnosis without access to the resources or support you need. For families and individuals in the Middle East affected by Prader-Willi syndrome (PWS), this was their reality – until recently. Thanks to the dedication of passionate advocates and the support of several PWS organizations, new doors of opportunity and understanding are opening across the region.
On June 1, 2023, Walaa Mohamed, mom to Ahmed, 13, officially founded PWSA Egypt & Middle East. Guided by Sarah Kasaby, PWSA | USA’s Information and Referral Specialist, and support from PWSA | USA, IPWSO, and Friends of IPWSO, this regional organization is providing critical resources for families across the Arab and Middle East region.
“Before we had PWSA Egypt & Middle East, there were very few resources in Arabic, no professionals to guide us, and no one to explain this rare diagnosis,” shared Walaa. “I didn’t know where to start. I felt lost and helpless as a parent.”
Walaa’s story echoes that of many families who struggled alone for years, seeking answers for their children’s complex medical and developmental needs. Today, PWSA Egypt & Middle East supports over 80 families in countries like Egypt and Saudi Arabia, offering healthcare guidance, emotional support, and a vital sense of connection.
The journey to this milestone began even before the organization’s official launch. Sarah and Walaa collaborated with PWSA | USA to host Zoom meetings, connecting families to world-renowned professionals in the PWS community. These sessions included live interpretation for Arabic-speaking participants and opened new doors to knowledge and empowerment.
“The lack of support in the region and the language barriers created an urgent need for us to establish an organization. The members of this group are, for the first time, able to connect with professionals who have heard and know about the syndrome, which had never happened before. It is very, very important. We are also striving to expand more awareness in the region, expand and approach more of the medical side of it, reach more doctors and professionals who speak the language, and get them up to date and up to speed on what’s happening with PWS around the world,” said Sarah.
Lynn Garrick, PWSA | USA’s Medical and Research Coordinator, emphasized the importance of international collaboration: “The opportunity to build connections across borders has been so rewarding. We’re working to create a global network of support for PWS families, and it’s incredible to see the difference that can make.”
PWSA | USA played a pivotal role in turning the vision of a Middle Eastern organization into reality. Through Sarah and our Family Support team’s guidance and resources, the seeds of PWSA Egypt & Middle East were planted. Collaborative efforts, like the Zoom sessions, laid the foundation for a new network of hope and support across the region.
“All our love and thanks go to PWSA | USA. They have truly helped us immensely. I send them special thanks as a mother and as the head of the organization for all their efforts with us to this day. PWSA | USA was one of our biggest supporters in establishing the organization here in Egypt and helped us get a grant from IPWSO. Many thanks to IPWSO and Friends of IPWSO for the translation grant,” said Walaa. “We translated two booklets, including the medical alerts booklet from PWSA | USA, which I think will benefit many mothers, especially those with new diagnoses.”
PWSA Egypt & Middle East’s mission extends far beyond information-sharing. The organization actively fosters community, advocates for awareness, and provides families with the tools they need to navigate life with PWS. Walaa’s passion and leadership, supported by PWSA | USA, have created a lifeline for families who once felt isolated.
“Our children deserve a better future,” Walaa shared. “PWSA Egypt & Middle East has given us hope we never thought possible. For the first time, we’re not alone in this journey.”
As PWSA Egypt & Middle East continues to grow, its impact serves as a testament to what can be accomplished when organizations and individuals unite to create change. Through partnerships, education, and an unwavering commitment to community, hope is crossing borders and transforming lives.
To learn more about the work of PWSA Egypt & Middle East, click here to visit their Facebook page.
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.