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.

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.

The Washington/Oregon State Chapter of PWSA | USA is hosting their own 50th Anniversary of PWSA | USA in Seattle, Washin...
09/09/2025

The Washington/Oregon State Chapter of PWSA | USA is hosting their own 50th Anniversary of PWSA | USA in Seattle, Washington. PWSA | USA began 50 years ago in Seattle and families in the area are celebrating that beginning.

For questions, email pwsa.seattle.anniversary@gmail.com

Register at https://bit.ly/3HQFK33

Journey of Hope Gala Honoree Spotlight 🌟For nearly four decades, Jim Kane has been a quiet but powerful force in the Pra...
09/08/2025

Journey of Hope Gala Honoree Spotlight 🌟

For nearly four decades, Jim Kane has been a quiet but powerful force in the Prader-Willi syndrome community. From helping drive critical discoveries in genetic testing to organizing groundbreaking hyperphagia conferences, Jim’s leadership, advocacy, and love for his daughter Kate have shaped PWSA | USA and touched families across the globe.

Read Jim’s full spotlight: https://www.pwsausa.org/journey-of-hope-gala-honoree-spotlight-jim-kane/

Then join us in honoring Jim, along with 11 other incredible leaders, at the Journey of Hope Gala on Sept. 26 in St. Louis, MO. Purchase tickets at https://give.pwsausa.org/event/pwsausa-50th-anniversary-journey-of-hope-celebration/e655783.

Thank you to our Pioneer Sponsor, 5 Brothers Produce, Inc.!We are grateful for 5 Brothers Produce's generous support of ...
09/07/2025

Thank you to our Pioneer Sponsor, 5 Brothers Produce, Inc.!

We are grateful for 5 Brothers Produce's generous support of PWSA | USA’s Journey of Hope Gala. Their partnership helps us celebrate five decades of progress, honor leaders in our community, and continue building a brighter future for individuals with Prader-Willi syndrome.

Join us on September 26 in St. Louis, MO as we cheers to 50 years of PWSA | USA! Get your tickets today: https://give.pwsausa.org/event/pwsausa-50th-anniversary-journey-of-hope-celebration/e655783

When: Saturday, September 13, 2025 | 1:00 PM ETWhere: Heritage Hills Golf Club, 17 Heritage Hill Drive, Lakeville, MAJoi...
09/07/2025

When: Saturday, September 13, 2025 | 1:00 PM ET
Where: Heritage Hills Golf Club, 17 Heritage Hill Drive, Lakeville, MA

Join the Lens family for a day of golf, good spirits, and great friends as you golf and dine at Heritage Hills Golf Club in Lakeville, MA. This event is celebrating its 16th year raising critical funding for PWSA | USA, an organization that serves individuals living with PWS, their families, caregivers, and more through family support, advocacy, and research.

Hunter Lens is 27 years old and has 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, a non-profit, 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.

Learn more at https://www.pwsausa.org/event/16th-annual-hunter-lens-golf-tournament/

A new resource is now available for PWS parents and caregivers!PWSA | USA, together with our Clinical & Scientific Advis...
09/06/2025

A new resource is now available for PWS parents and caregivers!
PWSA | USA, together with our Clinical & Scientific Advisory Board, created a comprehensive FAQ guide to answer important questions about VYKAT™ XR, the first FDA-approved treatment for hyperphagia (excessive hunger) in PWS.

This guide covers key topics such as effectiveness, safety, dosing, lifestyle, and more, and was developed with support from a grant provided by Soleno Therapeutics.

👉 Access the FAQ here:https://www.pwsausa.org/wp-content/uploads/2025/09/VYKAT-XR-FAQ-for-Parents.pdf

"Freya's class went on another backpacking trip to the Trinity Alps, a mountain range in northern California. We were sl...
09/06/2025

"Freya's class went on another backpacking trip to the Trinity Alps, a mountain range in northern California. We were slightly concerned about some fires in the area, but rain began to fall heavily as we loaded the packs onto our backs at the trailhead. About a mile in, the skies opened up with thunder, lightning, and hail. Freya was scared. Honestly, I was scared as well. But Freya kept moving forward. She jumped every time thunder loudly clapped and was honest with me about her fears, ranging between fear, panic, and the thought that we were going to die. (She still managed a snack request at one point, to which I pointed out that this was not snack weather.) Towards the end of the hike to the campsite Freya began singing and let me know it was her way of calming herself. The bad weather was lifting, and I could more fully appreciate that she was using a valuable skill - self-soothing.

We got to the campsite cold and soaked through, like everyone else. Freya did not complain. She did not say she wanted to go home or that she had bad feelings about what we had just hiked through. The rest of the trip was glorious and though the hikes were tough, Freya kept a positive attitude for (almost) all of it. Four days later, we hiked out of the mountains singing "We Shall Not be Moved" as the sun rose on what was shaping up to be a beautiful, sunny mountain morning. We talked about how scared we had been on the hike in, but that it felt good to be brave and courageous.

If we had not been on a class trip, I would have certainly turned around once the bad weather started. This was another valuable lesson for me on just how strong, capable, brave, and adventurous Freya can be."

- Submitted by Anne Fricke (mom to Freya, 13, living with PWS)

Submit your Spotlight on Hope at https://www.pwsausa.org/get-involved/share-your-story/

In honor of the upcoming Grandparents Day (September 7), we reached out to our community of grandparents to learn more a...
09/05/2025

In honor of the upcoming Grandparents Day (September 7), we reached out to our community of grandparents to learn more about their experiences, joys, and advice. We invited them to respond to prompts on how they support parents, spend time with their loved one with PWS, what brings them joy as a grandparent, and any advice they may have for other grandparents. Some shared how they are able to help in day-to-day tasks, and others who don't live in the same area shared how they enjoy their visits and offer support from afar. To all of our grandparents on this upcoming Grandparents Day – we thank you for your love, your compassion, your support, and for continuing to show up in our lives. Our lives are better because you’re here.

Read this blog at https://www.pwsausa.org/grandparent-perspectives/

In 1980, the first Executive Director of PWSA | USA, Marge Wett, was appointed. She served for 12 years, much of that ti...
09/04/2025

In 1980, the first Executive Director of PWSA | USA, Marge Wett, was appointed. She served for 12 years, much of that time without salary, running the organization from her home, until the first official office opened in Minneapolis, MN in 1988.

In honor of World Sexual Health Day, we're sharing a link to last September's wonderful Family Support webinar with Patr...
09/04/2025

In honor of World Sexual Health Day, we're sharing a link to last September's wonderful Family Support webinar with Patrice Carroll, PhD, LICSW, "Friendships and Beyond - Navigating Relationships and Sexuality with PWS."
Watch this webinar at https://www.youtube.com/watch?v=v0ysxF_hKSI

The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025.  Here’s ho...
09/04/2025

The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025.

Here’s how you can help:
The Alaska Drug Utilization Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the medications under review is Vykat XR, the first-ever hyperphagia treatment specifically for individuals living with PWS that was approved by the FDA in March 2025.

We’re asking families to submit written testimony to help decision-makers understand why access to this treatment is so urgently needed.

https://www.pwsausa.org/calling-alaska-pws-families/

The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025.  ...
09/03/2025

The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025.

Here’s how you can help:
The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the medications under review is Vykat XR, the first-ever hyperphagia treatment specifically for individuals living with PWS that was approved by the FDA in March 2025.

We’re asking families to submit written testimony to help decision-makers understand why access to this treatment is so urgently needed. Learn more at https://www.pwsausa.org/calling-montana-pws-families/

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

Alerts

Be the first to know and let us send you an email when Prader-Willi Syndrome Association USA posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Prader-Willi Syndrome Association USA:

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram