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.

As PWS parents and caregivers know, food and diet are a lifelong struggle with individuals with PWS. It begins with hypo...
02/06/2026

As PWS parents and caregivers know, food and diet are a lifelong struggle with individuals with PWS. It begins with hypotonia and failure to thrive in newborns and infants, progressing through the various stages of hyperphagia throughout childhood and adulthood. Infants with PWS are often listless or weak and struggle to eat. Thankfully, with modern day tools and techniques, we are able to navigate this initial challenge successfully. Nasogastric and gastric feeding tubes are common in the PWS community. This week's blog helps readers understand the differences, along with when and why one is preferred over the other. We've included insight and lived experiences from PWS parents as well.

Read this blog at https://www.pwsausa.org/nasogastric-and-gastric-feeding-tubes-what-why-and-when-they-are-needed/

The official Super Bowl Game Program is now live! 🏈Be sure to flip to page 107 to see the full-page advertisement create...
02/05/2026

The official Super Bowl Game Program is now live! 🏈

Be sure to flip to page 107 to see the full-page advertisement created in partnership between Soleno Therapeutics and PWSA | USA. We’re incredibly excited to see Prader-Willi syndrome highlighted on such a major national stage and to help raise awareness far beyond our community.

View the program here: https://pub.hozinc.com/sb60/ #

Resource Spotlight: Rare Disease Day 💙🦓 is coming up on February 28 - a global movement dedicated to raising awareness ...
02/05/2026

Resource Spotlight: Rare Disease Day 💙🦓
is coming up on February 28 - a global movement dedicated to raising awareness and advocating for the more than 300 million people worldwide living with a rare disease. Held each year on the last day of February, Rare Disease Day brings together individuals, families, organizations, and communities to shine a light on the challenges rare disease communities face and the ongoing need for research, support, and meaningful policy change.

Looking for simple, impactful ways to get involved? Check out PWSA | USA’s Rare Disease Day Packet: 15 Ways to Raise Awareness for PWS. It offers a collection of easy-to-do activities and ideas to help you spread awareness for both Rare Disease Day and Prader-Willi syndrome. Participate throughout February or join in on February 28!

Access the packet here:https://www.pwsausa.org/wp-content/uploads/2026/02/PWS-Rare-Disease-Day-15-Ways-to-Raise-Awareness-1-1.pdf

Today, February 3, 2026, the rare disease community has meaningful news to celebrate. Congress has passed legislation th...
02/03/2026

Today, February 3, 2026, the rare disease community has meaningful news to celebrate. Congress has passed legislation that includes a five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, increased federal investment in rare disease research, and several additional healthcare provisions that directly impact patients and families living with rare conditions.

Read more about this bill at https://www.pwsausa.org/congress-passes-five-year-reauthorization-of-the-rare-pediatric-disease-prv-program/

Registration is NOW OPEN! Residential Providers are invited to join PWSA | USA for the 2026 Residential Providers Confer...
02/03/2026

Registration is NOW OPEN! Residential Providers are invited to join PWSA | USA for the 2026 Residential Providers Conference - an unforgettable gathering dedicated to enhancing care, sharing insights, and strengthening community among residential providers in the PWS space.

📅 August 21–22, 2026
📍 The Kimpton Brice Hotel | Savannah, GA

For the second time, we’re bringing together residential professionals from across the country to learn from colleagues and field experts, exchange best practices, and build collective expertise to improve outcomes for individuals living with Prader-Willi syndrome.

This conference is exclusively for residential providers and offers a unique opportunity to connect, collaborate, and grow alongside peers who understand the vital work you do every day.

You can register, find the link to our room block, and learn more at https://www.pwsausa.org/residentialprovidersconference/.

We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings ...
02/03/2026

We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.

This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that has changed over the years, deciding when to speak up for him and when to let him speak up for himself, her concerns for his aging, and how she sees sibling advocacy as educating the community. She also talks briefly about her book, The Zuzu Secret.

Listen to this episode on your favorite podcast player or at https://pwsunited.podbean.com/

This week we're recognizing Feeding Tube Awareness Week. Feeding tubes are a common intervention in the PWS community, h...
02/02/2026

This week we're recognizing Feeding Tube Awareness Week. Feeding tubes are a common intervention in the PWS community, helping newborns, infants, and sometimes older individuals with PWS to grow and thrive. Stay tuned for PWSA | USA's Friday blog to learn more about feeding tubes.

The Prader-Willi Florida Chapter is excited to invite you to a special Family Zoo Day at Zoo Miami on February 21, 2026,...
02/01/2026

The Prader-Willi Florida Chapter is excited to invite you to a special Family Zoo Day at Zoo Miami on February 21, 2026, from 10 AM - 3 PM.

Join families from the Florida chapter of PWSA | USA at 10 AM at Zoo Miami, where together you'll enjoy a fun, inclusive, and community-building experience as families explore the zoo’s incredible exhibits and take part in engaging group activities designed to bring families closer and strengthen the PWS community.

Admission is $10 for adults, $5 for kids ages 4-12, and children 3 and younger are free.
Learn more about this event and purchase tickets at https://givebutter.com/family-zoo-day-miami.

We’re excited to launch a brand-new blog series: PWSA | USA's Board of Directors Member Spotlights! These Q&A style post...
01/31/2026

We’re excited to launch a brand-new blog series: PWSA | USA's Board of Directors Member Spotlights! These Q&A style posts will highlight each of our 12 incredible board members and give you a chance to get to know the people who help guide our mission: why they serve, what inspires them, and what PWSA | USA means to them. We are so grateful to our board members, past and present, for their dedication, leadership, and for being some of our staff’s biggest champions.

Our first spotlight features Jeffery Covington, who has served on the board for four years. As Jeff shares, “My hope for the future of PWSA | USA and the PWS community is that we continue to see progress towards a cure and anyone who needs assistance gets it, regardless of race, gender, socio-economic status, immigration status or sexual identity.”

Read the full spotlight here: https://www.pwsausa.org/pwsa-usa-board-of-directors-member-spotlight-jeffrey-covington/

The application period is now CLOSED for PWSA | USA's 2026 D.C. Fly-In. Applications submitted moving forward will be pl...
01/30/2026

The application period is now CLOSED for PWSA | USA's 2026 D.C. Fly-In. Applications submitted moving forward will be placed on a waitlist. Thank you to everyone who applied! Our Advocacy team will be reaching out soon with next steps. We look forward to seeing you in Washington, D.C. May 4–6, 2026.

For questions, please contact advocacy@pwsausa.org.
🔗https://www.pwsausa.org/events/dc-fly-in-2026/

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