Prader-Willi Syndrome Association USA

Prader-Willi Syndrome Association USA We hope you will suggest the PWSA | USA page to your friends! Website: www.pwsausa.org It is the most common genetic cause of obesity.
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Prader-Willi syndrome is a non-hereditary birth defect resulting from a disorder of chromosome 15. It is a serious, life-long, and life threatening medical condition occurring in 1:12,000-1:15,000 live births in both genders and all races. It is characterized by hypotonia (low muscle tone), hyperphagia (uncontrollable hunger), cognitive impairments, and difficult behaviors.

Describing Prader-Willi syndrome to school staff and caregivers, making sure to cover all the nuances of the syndrome, c...
09/03/2026

Describing Prader-Willi syndrome to school staff and caregivers, making sure to cover all the nuances of the syndrome, can be an overwhelming task. There are a number of symptoms of PWS that may or may not affect your loved one with PWS. For many of those symptoms, having an awareness and understanding is critical to the safety of the individual with PWS. "Health Concerns and the Student with Prader-Willi Syndrome: Information for School Staff" is an easy-to-access overview of PWS health concerns and strategies to help keep the individual safe. Download this one-pager and include it as a resource for school staff working with your loved one.

https://www.pwsausa.org/wp-content/uploads/2022/08/HealthConcernsStudent-revisedAug22.pdf

09/02/2026

Today is the first day of Newborn Screening Awareness Month!

We are excited to kick off the month with words of wisdom from an expert in the newborn screening space. Dorothea C. Lantz, Director of Community Engagement at Prader-Willi Syndrome Association | USA, Founder & CEO of Florida Rare, and Chair of the Community Advisory Board for Florida Sunshine Genetics, shares what newborn screening means to her.

Join Dorothea and other experts at this year’s Newborn Screening Bootcamp in Washington, D.C. Visit our page to learn more and register! https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-bootcamp/

Have questions about newborn screening? Comment below, and our staff will answer them later this month!

Keep an eye out for more resources, updates, and expert insights throughout Newborn Screening Awareness Month.

READ: A Message to the PWS Community from Neurocrine BiosciencesNeurocrine Biosciences, which acquired Soleno Therapeuti...
09/01/2026

READ: A Message to the PWS Community from Neurocrine Biosciences

Neurocrine Biosciences, which acquired Soleno Therapeutics (maker of VYKAT® XR) this past spring, has shared a letter introducing the company to the PWS community. In it, CEO Kyle Gano speaks to Neurocrine's commitment to the safe and appropriate use of VYKAT XR, shares plans for a new study launching in Q1 2027, and reaffirms the company's dedication to listening to and partnering with the PWS community.

Read the full letter on our blog 🔗https://www.pwsausa.org/a-letter-to-the-pws-community-from-neurocrine-biosciences/

PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode...
09/01/2026

PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode is a look back at the previous year of episodes (check out https://pwsunited.podbean.com/e/ep56-celebrating-one-year-of-podcasting/ for a look at the first year of episodes). From sibling advocacy, a personal look at single caregiving, and advice from PWS dads, to behavior and cognitive functioning, PWS research, rare pharmacies, and the inspiring world of PWS advocacy, this episode highlights the incredible work of families, caregivers, professionals, volunteers, and staff in seeking to improve the lives of and empower those living with Prader-Willi syndrome.

Listen on your favorite podcast app or at https://pwsunited.podbean.com/

In honor of Make-a-Will Month (August), we’ve curated a list of “Legacy Tips” to help paint a broader picture of what le...
08/31/2026

In honor of Make-a-Will Month (August), we’ve curated a list of “Legacy Tips” to help paint a broader picture of what leaving a legacy may look like and the value it can bring to the PWS community.

Legacy Tip #5
Your legacy can provide hope for future PWS families.

The support, resources, advocacy, and research available today exist because previous generations chose to invest in the future. Planned gifts help continue that tradition of generosity and hope. ​

Learn more at https://www.pwsausa.org/make-an-impact/planned-giving/

Two years ago, we embarked on a new adventure, bringing a new, incredible resource to the PWS community. From PWS specia...
08/31/2026

Two years ago, we embarked on a new adventure, bringing a new, incredible resource to the PWS community. From PWS specialists, professional providers, biotech and pharmaceutical representatives, to siblings, caregivers, parents, and individuals living with Prader-Willi syndrome, this podcast not only gives the latest news in research, advocacy, and family support, it brings the listener into the heart of the PWS community. Our goal has been to connect education, awareness, and resources with those living with PWS and their supporters.

If PWS United has impacted your PWS journey, brought you hope, inspiration, or critical knowledge and awareness, please share with us in the comments below. What has been your favorite episode? What do you want to hear more of?

Help us celebrate 2 years by telling a friend, family member, professional caregiver, or member of your community about our podcast. Follow us on your favorite podcast app. Leave us a rating and review. Engage with us to help spread the word about the podcast and ultimately expand our community and awareness about PWS. Sometimes PWS advocacy is simply sharing a link.

https://pwsunited.podbean.com/

Stay tuned for tomorrow's episode where Carrie and Anne explore some of the hits from the past year of PWS United!

PWS families and supporters in Massachusetts! ⛳✨Join the Lens family on Saturday, September 19, 2026, at the Heritage Hi...
08/30/2026

PWS families and supporters in Massachusetts! ⛳✨

Join the Lens family on Saturday, September 19, 2026, at the Heritage Hills Golf Club in Lakeville, MA, for a day of golf, good spirits, and great friends. The Hunter Lens Golf Tournament is celebrating its 17th year raising critical funds for PWSA | USA.

"Hunter Lens is 28 years old and lives with Prader-Willi syndrome. He leads a happy, active life despite his daily challenges. He has friends, a loving family and his weight is under control. Supporting PWSA | USA will open more doors for Hunter and others who live with PWS, which ultimately means a better life. Hunter deserves a better life. Please join us on this special day in honor of Hunter to benefit PWSA | USA’s mission." - John Lens, dad to Hunter

Learn more and purchase tickets: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873

August 30, National Grief Awareness Day, recognizes that grief is a normal part of our lives, not as a problem to be sol...
08/30/2026

August 30, National Grief Awareness Day, recognizes that grief is a normal part of our lives, not as a problem to be solved but something to honor and find appropriate support for. In honor of this topic, we are sharing a past blog from Parent Support Coordinator, Kristi Rickenbach. She shared with the PWS community what unprocessed grief may look like, how it can have a negative effect on your life, and how she herself has stepped into the work of processing her own grief. As parents and caregivers of individuals with PWS, it may seem necessary to suppress your grief in the overwhelm of addressing PWS. We encourage you to honor your grief, not by ignoring it or wallowing in it, but by sharing it with a friend, family, a trusted community member, a professional, or where you feel comfortable and safe. As always, if you need additional support, you can reach out to us at [email protected].

Read this blog at https://www.pwsausa.org/the-importance-of-dealing-with-grief/

PWSA | USA Board Member Spotlight ✨We're proud to spotlight Michelle Torbert, who is currently serving her 16th year on ...
08/29/2026

PWSA | USA Board Member Spotlight ✨
We're proud to spotlight Michelle Torbert, who is currently serving her 16th year on PWSA | USA's Board of Directors! Michelle is mom to Leslie (28, living with PWS) and has been a dedicated, longtime volunteer, advocate, fundraiser, former Board of Directors Chair and so much more for our community.

When asked what she finds most meaningful about being on the board, Michelle shared:
“I have seen many changes over the years that I have served on the board and feel we have accomplished many great things to help our families. I love helping to come up with ideas and projects that help our families.”

Read Michelle's full spotlight at https://www.pwsausa.org/pwsa-usa-board-of-directors-member-spotlight-michelle-torbert/.

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1032 E Brandon Boulevard 4744
Brandon, FL
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