Contributed by Niki Fuller
Allow me to take a moment to share a personal journey that has profoundly impacted our lives. In 2012, I founded Your Journey Team with a vision to assist individuals in their most safest place and financial investment—their home. Serving Indianapolis and its neighboring communities, we’ve been dedicated to guiding our clients through their real estate endeavors, starting my 24th year in real estate.
However, it wasn’t until December 23, 2020, with the birth of my nephew James, that our perspective shifted dramatically. James was diagnosed with Prader-Willi syndrome (PWS), within 30 days of his birth. There were no indicators of any issues during my sister-in-law’s pregnancy. His arrival opened our eyes and hearts to the remarkable PWSA | USA Community. James, now three years old, has become our family’s beacon of love and joy. Despite his challenges, his infectious spirit brightens our lives each day.
As James continues to reach milestones, such as his upcoming enrollment in preschool for the 2024-2025 school year, we remain in awe of his resilience and determination. His love for Disney’s Moana, affinity for goats, and budding communication skills, including sign language, exemplify his intelligence and charm. He lights up every room he enters and going to the grocery store is a joy for everyone he comes across. People stop to say hello and he loves the attention.
I asked my brother and sister-in-law how we could support James and the PWS community and they said the best thing we could do is choose PWSA | USA to support James and the research for this very rare disease in hopes of a cure.
At Your Journey Real Estate Team in Central Indiana, our commitment to supporting PWSA | USA’s testing and aiding families in need is inspired by James’ remarkable journey. We contribute a portion of our real estate commissions to assist PWSA | USA in honor of James. He has become a cherished figure within our family network, spreading boundless joy.
If you would like any information or assistance, please don’t hesitate to reach out. We love real estate referrals and giving some of our real estate commissions to PWSA | USA every time we sell a house!
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.