For 19 years, the Angel Drive had provided critical funding to help thousands of PWS families. Please see one family’s story below. We are “Saving and Transforming Lives”.
Hi! I would like to introduce you to my crazy beautiful family. Moises (daddy) Breanna (myself/aka mommy) Madison (10.5 yrs.) Noah (6.5 yrs. diagnosed with cerebral palsy) and last, but not least, Ethan Moses (13 months diagnosed with PWS).
Where do I begin? Aside from the other obvious curve balls in my life, Ethan crash landed with a syndrome I had never dreamt was a real thing. We spent his first 3 weeks’ bedside in the NICU trying to figure out how to pick up the pieces and of words that could’ve cut through thin air. After I mourned the birth of what I thought was a healthy pregnancy (which is normal and healthy) I awoke from my medically termed haze and decided to FIGHT! For myself, my sons, and my family. I hit the Internet (HARD) and found PWSA (USA).
This is where my life and perception of my son changed. He was no longer Ethan with PWS, he was just Ethan, my son. PWSA (USA) gave me the tools and information I needed to fuel the fire inside of me to NEVER GIVE UP HOPE!
They sent me packets, medical alert booklets, contact information for various lifelines, and most importantly FAITH! Faith I was not alone. Faith there was light in the darkness. Faith this syndrome will not define our family.
I was assigned a new parent mentor through PWSA (USA), Lori, not just a mentor, a fellow mom. She cared! She cared deeply for me, my family (whom she’s never met) and our well-being. She took calls and messages from me ANY time I felt weak or clueless. I hope to one day have her grace, and become a part of the PWSA (USA) new parent mentor team, so that I may someday mentor a “me”. Without this organization, I would not have the lady guts to challenge this syndrome head on, the way that I have! Thank you PWSA (USA), for helping me find my “new normal” and for giving me hope, and for sending me other moms (families) who have become my rocks!
All our love and blessings! The Garcia Family
Breanna Garcia
CLICK HERE to learn more about the 2016 Angel Drive
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.