Prader-Willi Syndrome Association USA

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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.

02/21/2026

PWSA | USA Board Member Spotlight ✨

Get to know Dini Rao, mom to Ayoni (9), who is living with Prader-Willi syndrome, and one of our newest Board of Directors members in 2026. Dini will also serve as Chair of the new Equity Committee, helping guide efforts to ensure every family has access to the support and care they deserve.

When asked, “What is your hope for the future of PWSA | USA and the PWS community?” Dini shared: “I’d like to see a day when there are no more lasts – no more last diagnosed, no more last treated. I want to see an end to racial, ethnic, religious and other disparities in Prader-Willi syndrome by accelerating equitable diagnosis, access to evidence-based care, and inclusion in research—so no community is left last.”

Read Dini’s full spotlight here: https://www.pwsausa.org/pwsa-usa-board-of-directors-member-spotlight-dini-rao/

02/21/2026

Check out PWSA | USA's Director of Community Engagement Dorothea Lantz (and proud mom to Hunter) talking all things PWS and PWSA Florida Chapter's Family Zoo Day on Inside South Florida on WSFL-TV! We’re grateful for opportunities to raise awareness and spotlight the incredible PWS community.

Watch the segment here: https://www.wsfltv.com/news/local-news/zoo-miami-hosts-special-day-for-families-affected-by-prader-willi-syndrome

02/20/2026

Happy National Caregiver's Day to all caregivers! For this day we are choosing to honor the professional caregivers in our community. Your heart, dedication, and support truly help our individuals thrive and we are so grateful for all of you. We asked Patrice Carroll, Director of PWS Services at Latham Centers and a pillar of our community, to share a blog about being a professional caregiver. Her words are a testament to the compassion, expertise, and heart that she brings to this community.

Read Patrice's blog at https://www.pwsausa.org/national-caregivers-day-the-real-job-description/

02/20/2026

Happy National Caregivers Day! ❤️❤️❤️

02/19/2026

PWS community! Join us for a free informational webinar to learn the latest updates on Aardvark Therapeutics’ HERO clinical trial of ARD-101. We will be joined by Aardvark Therapeutics Chief Executive Officer Tien Lee, M.D., and Chief Medical Officer Manasi Jaiman, M.D., M.P.H..

When: Tuesday, March 10, 2026 @ 5 PM PT | 8 PM ET
Where: Online via ZOOM
Register: https://us02web.zoom.us/webinar/register/WN_43f1-_7jQvudZuWo_ZEjNw #/registration

The HERO study is a global Phase 3 clinical trial investigating ARD-101, an innovative, orally administered treatment designed to help reduce hyperphagia (excessive hunger) and food-seeking behaviors in individuals with Prader-Willi syndrome. This randomized, double-blind, placebo-controlled trial represents an important step toward identifying a potential new treatment option for the PWS community.

New development: Trial sites across the United States are now actively enrolling participants ages 7 and older.

02/19/2026

PWSA | USA’s Resource Spotlight of the Week 🔦💜

is just over one week away (Saturday, February 28, 2026)! We’ve created a dedicated webpage with everything you need to get involved including: Ways to spread awareness, shareable graphics, rare disease FAQs, a look at EveryLife Foundation's Rare Disease Week, an opportunity to “Share Your Rare” story, and more.

Explore all the resources here: https://www.pwsausa.org/pws-rare-disease-day/

02/18/2026

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

02/17/2026

PWS Families are invited to attend the Soleno Therapeutics’ North Carolina PWS Community Day. To demonstrate their commitment to the PWS community and in collaboration with PWSA | USA and FPWR, Soleno is bringing families together to learn, interact, and feel supported by one another.

This event will take place on Saturday, Feb. 28, 2026, from 1 PM - 4 PM at The Museum of Life and Science (433 W. Murray Ave., Durham, NC 27704)
Event Date: Saturday, February 28th, 2026

Soleno invites families and their loved ones affected by PWS to join them for this event.

RSVP for this event at https://www.surveymonkey.com/r/SolenoPWSCommunityDay

02/17/2026

What’s in store for PWSA | USA in 2026? 👀
In this special PWS United podcast episode, our co-host Carrie sits down with members of the PWSA | USA staff to hear what they’re most excited to be working on this year, from new resources and community programs to big events and behind-the-scenes initiatives designed to better support the PWS community. Tune in for a sneak peek at the goals, momentum, and heart driving the year ahead: https://pwsunited.podbean.com/e/ep80-whats-in-store-for-pwsa-usa-in-2026/ 🎧

02/16/2026

PWSA | USA is built on the dedication of families, caregivers, and supporters who believe in advancing care, advocacy, and resources for individuals with Prader-Willi syndrome. In addition to lived experience, the organization relies on professional expertise to remain strong, sustainable, and forward-thinking.

This is an opportunity not only for parents and caregivers, but also for extended family members, friends, and professional allies who want to support the mission in a meaningful way. If you’ve ever wondered how your skills could make a difference beyond a donation, this is a powerful way to contribute.

PWSA | USA welcomes individuals who are willing to share their expertise in the following areas:
• Communications & Media
• Financial Expertise
• Fund Development
• Human Resources (generalist)
• Legal Expertise
• Philanthropy
• Website / Digital Expertise

Volunteering your professional skills helps strengthen the organization’s infrastructure and allows PWSA | USA to better serve families nationwide. Contributions of time and talent — whether ongoing or project-based — play a vital role in advancing this important work.
If you, or someone you know, has experience in any of these areas and is interested in learning more, please contact Stacy Ward, CEO, at info@pwsausa.org and type “I have a skill” in the subject line.

02/16/2026

On Friday, Feb. 20, 2026, we're celebrating National Caregivers Day by honoring the professional caregivers in our community. This is a day to recognize the compassion, expertise, patience, and support these caregivers provide our families and loved ones with PWS. Whether they work in a group home or one-on-one, we want all professional caregivers in our community to know how deeply appreciated they are!

We've made a few resources so you can personally thank the professional caregivers in your loved one's life. And remember, these cards pair well with a bouquet of flowers, box of chocolate, gift card to a local restaurant, or another gift of appreciation.

Download and print (then fold) this card to personalize for your caregiver: https://www.pwsausa.org/wp-content/uploads/2026/02/Caregivers-Day-Card-Printable-jpg.webp

Or download this pre-written image to send in an email: https://www.pwsausa.org/wp-content/uploads/2026/02/Caregivers-Day-Card-Virtual-jpg.webp

02/15/2026

Kristi Rickenbach, PWSA | USA’s Parent Support Coordinator, is here to help families along this PWS journey, fueled by compassion, hope, experience, and, of course, coffee.

If you are a caregiver, family member, or an individual with Prader-Willi syndrome in need of support on the PWS journey, please email info@pwsausa.org.

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

Website

http://www.pwsausa.org/

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