Prader-Willi Syndrome Association USA

06/12/2026

Helping our loved ones improve their social skills is a necessary, prevalent, and often challenging part of this journey. This week's blog includes an incredible resource developed by Lisa Graziano, M.A., LMFT, offering caregivers a deeper understanding of executive functioning and social skills, along with many practical ways we can support positive development. Read this blog at https://www.pwsausa.org/how-can-i-help-improve-my-childs-social-skills/

06/12/2026

To our families and individuals in the LGBTQIA+ community, may you feel supported, loved, safe, and accepted. The PWSA community is a community for all families and individuals affected by PWS. You are welcome here.

06/11/2026

PWSA | USA is currently seeking research project applications with direct impacts on individuals and families affected by PWS. We are offering mini-fellowship grants to support providers in enhancing their understanding of PWS through clinical proctorships. Research priorities include expanding knowledge about PWS, applying therapies, and attracting new providers and investigators to the field. Funding opportunities include:

– A grant of up to $150,000 for 12 months, with the possibility of a second grant period of 12 months of funding upon competitive renewal.
– Or, a smaller budget and/or shorter duration. Awards of up to $25,000 USD may be considered on an individual and rolling basis.

Applications and inquiries can be directed to Stacy Ward at [email protected] or by calling (941) 312-0400. The deadline to submit a Letter of Intent is August 14, 2026, by 5pm EST. Visithttps://www.pwsausa.org/wp-content/uploads/2026/06/Request-for-Prader-Willi-Syndrome-Research-Grant-Applications-2026.pdf to learn more and to read additional guidelines.

06/11/2026

This week's Resource Spotlight is in honor of Scoliosis Awareness Month (June). "Guidelines on Scoliosis Monitoring and Treatment for Children with Prader-Willi Syndrome" is a great resource for anyone wanting to learn more about PWS and scoliosis, including casting vs. bracing and how to prepare for scoliosis surgery. Download this resource athttps://www.pwsausa.org/wp-content/uploads/2022/12/Guidelines-on-Scoliosis-Monitoring-and-Treatment-for-Children-with-PWS.pdf

06/10/2026

Our latest from Ask Nurse Lynn. Read the full blog, find valuable resource links, and submit your own non=emergency medical question at https://www.pwsausa.org/category/ask-nurse-lynn/

06/10/2026

PWSA | USA is spreading the word about an exciting opportunity from the Global PWS Registry. This month (June), the registry is running a challenge to grow its dataset, and your participation could make a real difference for PWS research.

How it works:
➡️ Log in to the Global PWS Registry at pwsregistry.org.
➡️ Complete or update any five surveys to earn one entry into the drawing.
➡️ Each additional five surveys earns another entry (up to five winners of $100 gift cards).

Why it matters: Because PWS is a rare disorder, every response counts. Researchers around the world use registry data to study symptoms, identify unmet needs, improve clinical trials, and uncover insights that may lead to new therapies. The more families who participate, the more powerful the data becomes, and the stronger the foundation for future progress.

Deadline: June 30, 2026
Questions? Email [email protected].

06/10/2026

Please join the TREND Community for this wonderful opportunity.

Many families living with PWS have questions about sleep, and cataplexy is often one of the most misunderstood symptoms.
Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation featuring caregivers, lived experience perspectives, and clinical experts. Together, we'll explore how to recognize cataplexy, better understand its connection to sleep disorders in PWS, and share real-world experiences and practical tips.

🗓️ Wednesday, June 17, 2026
⏰ 2:00–3:30pm ET/1:00-2:30pm CT/12n-1:30pm MT/11:00am-12:30 PT

Whether you're newly learning about cataplexy or looking to connect with others who understand the journey, we hope you'll join us.
RSVP here: https://www.eventcreate.com/e/cataplexy-pws-webinar

06/09/2026

Check out the latest in PWSA | USA events and PWS news in research, family support, and advocacy.

Listen to PWS United on your favorite podcast app or at pwsunited.podbean.com.

06/08/2026

June is Scoliosis Awareness Month and we're sharing tips with the PWS community on the topic of scoliosis. Scoliosis is a common diagnosis with PWS, and individuals should be monitored from a young age. Families in our community have found hippotherapy to be helpful in their management of scoliosis.

Learn more about hippotherapy at https://www.madeformovement.com/blog/what-is-hippotherapy

Learn more about scoliosis and PWS athttps://www.pwsausa.org/wp-content/uploads/2022/11/Guidelines-on-Scoliosis-Monitoring-and-Treatment.pdf

06/07/2026

Counting Blessings in Miles! 💙🏃‍♀️
Our own Director of Accounting Amy Maust is running the Charlevoix Half Marathon in Charlevoix, Michigan on June 20, 2026 to raise awareness and funds for the PWS community.

In Amy's words: “I’m running for PWSA | USA to ensure that all PWS families have the support, advocacy, research, and resources needed to help individuals with PWS thrive. The work we do at PWSA is a blessing for families affected by PWS. I decided to run the Charlevoix Half marathon in order to ‘count my blessings in miles’ as a way to bring awareness and raise money for PWS.”

Cheer her on by donating to her campaign. Every dollar helps ensure PWS families have the support, advocacy, and resources they need to thrive: https://give.pwsausa.org/campaign/781664/donate