Beat the Heat in Arizona!
As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with so many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and collectively sharing information, guidance, support, great conversations, maybe some tears and certainly some laughs. Another thing we’ll all be sharing is the HEAT. Phoenix in June will be hot, and as we know about our loved ones with PWS, temperature regulation and staying cool in the heat is a challenge. But don’t worry, we’ve got you covered!
PWSA | USA, IPWSO, and FPWR are working together to make sure that your loved ones are safe in the heat. We will have safety protocols in place and plenty of cooling resources. Below is a list of some of those protocols, along with tips from AZ families on how they keep their loved ones cool in the heat so families can come equipped with appropriate resources. If you’d like to read more about staying cool, what heat exhaustion looks like, and what to do if you notice symptoms, check out this past blog Staying Safe in the Heat – Prader-Willi Syndrome Association | USA
How we’re helping you stay cool at the conference:
- *Outdoor misting stations
- *Various water stations around the property
- *Outdoor fans in high traffic outdoor areas
- *Signage around the property to help people get to the conference center quicker
- *All sessions and camps will take place indoors with the AC
- *Outside time will be limited for campers
- *A nurse’s station, equipped with additional cooling mechanisms including ice packs, will be located near the camps
- *Campers will receive some items specifically for helping them keep cool
- *The conference site has an elaborate pool area (free for hotel guests, non-hotel guests can pay to enter) that families can visit.
Tips from Arizona families on staying safe in the desert heat:
- *Stay hydrated! Use electrolytes if needed.
- *Stay inside as much as possible.
- *Wear a wide brimmed hat.
- *Wear sunscreen.
- *Wear light clothing in natural fibers.
- *Bring cooling towels.
- *Portable stroller fans are helpful.
- *Bring water shoes/sandals – don’t go barefoot at the pool!
- *Our desert is beautiful but DO NOT attempt hiking this time of year, even in the early morning.
- *Know the signs of heat exhaustion & heat stroke.
- *If driving: use sunshades, park in shade when possible, bring an ice pack for car seats to avoid burning hot buckles.
- *The sun is no joke, even while at the pool and in the water, please take frequent breaks.
- *Again: stay hydrated! Never leave your water bottle behind. Phone, wallet, keys, water bottle.
Remember to come prepared with necessary items to keep your loved one cool. If you have questions or concerns while at the conference, please don’t hesitate to reach out for help.
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.