Category: Blog

Recognizing Sleep-Related Symptoms of PWS

World Narcolepsy Day is recognized each year on September 22nd. Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects about one in 2,000 people. Continued research suggests that children and adults with PWS experience sleep disorders including chronic insomnia and narcolepsy with cataplexy to a greater...

A Look into Camelot Society’s Group Home

Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW  Camelot Society is an adult residential provider in the State of Washington that serves individuals diagnosed with Prader-Willi Syndrome (PWS).  They currently operate one Group Training Home (GTH) and eight Supported Living (SL) homes. Group training homes are community-based, residential facilities that...

National Direct Support Professionals Week 2022

National Direct Support Professionals Week is September 11 - 17, 2022.  This is a week to recognize and show appreciation for the work of providers who are supporting individuals with developmental and intellectual disabilities to maximize their independence. Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions, including direct...

Tell Your US Senator to Vote Against the Reconciliation for Prescription Drug Pricing Legislation

The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases! The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of...

Participate in a PWS Specific Sleep Study

Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...

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