PWSA Blog

Early Intervention: IDEA Part C

Contributed by PWSA | USA's Family Support Director Stacy Ward PWSA | USA often receives questions about early intervention, the difference between Individualized Education Programs and Individual Family Support Plans, and how to qualify for each from parents. Part C (Early Intervention) of the Individuals with Disabilities Education Act (IDEA) was established in 1986 by...

2022 PWSA | USA Volunteer Summit Recap

Contributed by PWSA | USA Community Engagement Coordinator Dorothea Lantz If there is one word to describe the events of PWSA | USA’s first ever Volunteer Summit in Dallas, it would be magical. We had more than 30 of our dedicated volunteers in attendance for a Saturday filled with hope and ideas on how to...

It’s Teacher Appreciation Week!

Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you?  I know I would not be.  I considered being a teacher – who does not love the idea of getting out of work by three...

The 2022 Giving Challenge is now LIVE!

The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...

Hyperphagia and How it Affects Learning

Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...

National Siblings Day: Joe Gill

April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...

Lawmakers Review Several Legislative Proposals Intended to Accelerate Innovation of Therapies, Including STAT Act

On Thursday, March 17th, the House Energy & Commerce Subcommittee on Health held a hearing regarding The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight. This hearing explored a number of legislative proposals intended to accelerate innovation of therapies, while ensuring appropriate levels of oversight, including H.R. 1730, the Speeding Therapy Access Today...

Texas Prader-Willi Association Opens New PWS Group Home

While the world and our Prader-Willi syndrome (PWS) community have been dealing with the pandemic's unpredictable circumstances, specifically the many obstacles to find appropriate supported living, the Texas Prader-Willi Association has managed to open a new PWS specific group home. The Texas Prader-Willi Association purchased and renovated a three-bedroom house to serve as a PWS...

What Type of Research Matters to You?

For more than 40 years, PWSA | USA has played a critical role in sponsoring and advancing research for the benefit of our PWS community. We are excited to continue this important commitment to PWS research in ways you have always relied on (organizing scientific conferences, offering grants to clinicians, etc.). We are also eager...

PWSA | USA’s 2021 Annual Report

Dear friends, On behalf of PWSA | USA's Board of Directors and Staff, we are sincerely grateful for YOU, our PWS community, for coming together in advocacy, family support, and research over the past year. We would not be able to offer the resources, care, and hope to our families and individuals living with PWS...

Thank You for Shining a Light on Rare Disease Day!

Thank you to our PWS community for helping us shine a light on Rare Disease Day! This year, the National Organization for Rare Disorders (NORD) focused on encouraging buildings, landmarks, and monuments around the world to participate in a chain of lights to recognize Rare Disease Day. We are excited to share that many buildings/landmarks/monuments...

Help PWS experts learn more about feeding tube use in PWS

The information below was provided by the Global PWS Registry --------------------------------------------------------------------------------------- We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth.  If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new...

Global PWS Registry Shares Latest Orthopedic Data for Individuals Living with PWS

The information below was provided by the Global PWS Registry and approved by the Institutional Review Board (IRB) -------------------------------------------------------------------------------------------- Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and/or surgery for spinal issues....

My Brother Daniel

Written by Daniel's Sister _________________________________________________________________________________ My brother, Daniel, was born in 1956, the same year that PWS was formally identified but he was not diagnosed until he was sixteen. Our family, (two parents, Daniel, and his four sisters) moved around a lot — from the U.S. to Chile, France, Canada and Venezuela—eventually settling in the...

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