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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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Convention Connections: One Mother Shares How the PWSA (USA) Convention Helped Her and Her Family

A few days ago, I was chatting with a fellow special needs mama when she mentioned that there was a conference on the other side of the country for the condition her daughter has, but she wasn’t sure if she should go. It took everything in me to not tell, “WHAT?! ARE YOU NUTS?!” Instead, […]

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PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS

The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In […]

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13 Year Old with PWS Will Be On a Popular TV Show!

We have exciting news for you all! On Monday, June 27th, Jack Lindsey who is 13 years old and has PWS will be on a popular TV show on the sportsman channel at 6pm CST. The opening episode features Jack hunting and killing a buck with his bow. The air times are as followed: Mon. […]

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Special Message from Mayim Bialik – PWS Awareness Month

It’s PWS Awareness Month! Special message from Mayim Bialik! Mayim Bialik and PWSA (USA) are working together to help raise awareness for Prader-Willi syndrome. In honor of PWS awareness month, if you register and raise a minimum of $200 from now until May 31st, you will be entered for a chance to win an Amazon […]

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