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Meet Your Family Support Team

Kate Beaver, MSW, CSW-Family Support Counselor Because her daughter has Prader-Willi syndrome, Kate had first-hand knowledge of the challenges families encounter with the syndrome and had valuable personal experience in how to access services and support for her family prior to joining the PWSA (USA) staff. As a Crisis Intervention and Family Support Counselor, Kate’s […]

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Managing Behavior

One of the most difficult challenges parents face is managing their child’s behavior.  Whether it occurs at home, at school, or in a residential care setting, problematic behavior is one of the most frequent reasons parents and providers call PWSA (USA) for help. The first step to effectively manage behavior is to identify the problematic […]

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Grandparents: Make Philanthropy a Family Affair

Helping Your Grandchildren “Experience” Philanthropy How often do you hear that today’s generation of children are self-absorbed or one of entitlement? That’s a pretty harsh statement to make, and one that I don’t entirely agree with. I think kids today don’t just want things – they want experiences too! Children see the needs of the […]

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Recording of Recent Webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now Available

  The recent webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now available. This webinar provides important information about PWS clinical trials including: what to expect when participating in a clinical trial, what questions you should ask, and how to get the information you need to decide if […]

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LivingHealthy with Prader-Willi Syndrome
: Cookbook and Nutrition Tips

To purchase this item, click here   Latham Centers recently published its first cookbook entitled LivingHealthy with Prader-Willi Syndrome: Cookbook and Nutrition Tips. Written for the Prader-Willi syndrome community, the cookbook is a complete resource for planning nutritious, delicious meals for individuals with PWS— and for tips and advice from experts in the field. The menu […]

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A Mother’s Day Gift

By Lori Moline  After a long, harsh Minnesota winter, the sounds of birds, and the sight of greenery and flowers are like a transfusion of hope- That’s why one of our family’s favorite activities is the annual trek to the local greenhouse and plant store.  This year, with everyone else busy with other things, Sophie […]

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NEXUS CHILDREN’S HOSPITAL ANNOUNCES PROGRAM RESTART

HOUSTON — January 22, 2018 — Nexus Health Systems is excited to announce the restart of their national Changes Health and Wellness program at Nexus Children’s Hospital, on the west side of Houston. Reopening on January 15, the program offers support and treatment for patients with Prader-Willi Syndrome (PWS), a rare genetic disorder that affects learning […]

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Advocating for your child in the ER

A Mother’s Experience By Katie Moureau My son Cade is three years old; and has been on oxygen since he was 4 months old. This year started out with a bang!  One early winter morning, Cade’s pulse ox started beeping.  By 5am it was alarming frequently as he was unable to maintain his oxygen levels […]

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