For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather for educational offerings. Melanie reached out to Library Director Julie Perrin who hadn’t heard of PWS and didn’t know about Rare Disease Day. The library team was immediately excited and began drafting plans for some events and programs in anticipation of National PWS Awareness Day (May 15, 2024), as well as looking towards Rare Disease Day 2025! The McDonald family purchased an additional copy of Dr. Destiny Pacha’s book “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome” and arranged to gift it to the Jaffrey Public Library in Josephine’s honor. The library staff were excited to receive it and even wore zebra stripes to welcome Josephine!
About “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”:
Written by Destiny Pacha, ED.D., the book follows Katie, a spirited character navigating school life while living with PWS. Through Katie’s journey, readers gain insights into the challenges and triumphs of individuals with PWS, fostering empathy and understanding. “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome” underscores the importance of inclusivity and connection, reminding us all of the power of a simple greeting to initiate meaningful relationships.
If you feel inspired to purchase and donate a copy of this book to your library, school, or any other community center, click the button below.
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.