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.

11/25/2025

is just ONE WEEK AWAY, and this year, you can give twice the good when you support PWSA | USA 💙 Every dollar donated on Giving Tuesday will be matched - up to $20,000! That means your gift goes twice as far in helping PWSA | USA provide essential support services, advocacy, and resources that families depend on every day.

📅 Mark your calendars: Giving Tuesday is December 2, 2025
Learn more about how you can double your impact and join the movement on social media at https://www.pwsausa.org/give-twice-the-good-on-giving-tuesday-december-2-2025/.

11/25/2025

Ep68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research Spotlight
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BONUS: On today's episode, you'll hear a special surprise announcement from Prader Silly co-organizer Lucy Sinsheimer (mom to Olive, 1, living with PWS) about next year's event!
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Listen to the latest in PWSA | USA events and PWS news in research, family support, and advocacy using your favorite podcast platform or at https://pwsunited.podbean.com/.

11/24/2025

Hope in Action - Finding Strength in Community 🩵🎥
As parents to seven-year-old Zahra, who is living with PWS, Pia and David Dorson know how essential support and community truly are. In this Hope in Action video, they share how PWSA | USA has been there for their family - from education and IEP guidance to counseling, advocacy, and connecting with other parents who understand the journey. Your tax-deductible donation to the 2025 Angel Drive (no matter the size) helps ensure families like Pia and David's never face PWS alone. Give your gift of hope today at https://www.pwsausa.org/angel-drive-2025/. Thank you!

11/23/2025

Attention all moms and female caregivers in the PWS community! We're thrilled to announce the dates and location for PWSA | USA's 2nd Moms’ Retreat...

📅 Retreat Dates: October 16-17, 2026 (Depart October 18)
📍 Grand Hyatt Deer Valley Hotel in Park City, Utah

This special weekend will offer 100 moms and female caregivers an opportunity to rest, recharge, and connect with others who truly understand their journey. Through uplifting sessions and activities centered around themes like “You Belong Here,” “Giving Yourself Grace,” and “You Matter Too,” attendees will find encouragement, belonging, and renewal.

We look forward to opening registration for the 2026 Moms’ Retreat soon – stay tuned!

11/22/2025

"We try really hard to raise PWS awareness in our area, North Logan, Utah. This year our local High School Latinos in Action Club and Elementary School Teachers and students decided that they wanted Temi to have the same experience as other kids, but didn’t want her family to have to worry about her safety. They set up a classroom door to door trick or treat for just her. The teachers gave her trinkets, fidgets, stuff animals, books, puzzles, and PWS safe snacks. She had the best time and at the end of the day, all the other kids left their candy behind and played with her toys and her instead. They have decided to do this every year. It is wonderful to live in a community with a school district that cares as much about her needs as we do!" - submitted by Temi's school

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

11/21/2025

How do we prepare for the holidays? Even in “typical” homes, preparing for the holidays can be challenging. When PWS is introduced to this situation, the holiday preparation stress may skyrocket.

How families prepare and navigate the holidays is unique to each family. There is no one way. We cannot expect what works for one family to work for everyone. Some families continue to avoid sugar throughout the season. Other families allow their loved one some indulgence. And some families just stay home.

This re-introduced blog contains numerous links to posts on navigating holidays and celebrations with PWS. You can find it at https://www.pwsausa.org/preparing-for-the-holidays/

11/20/2025

Another way to support the 2025 Angel Drive? Make your smartest gift before year-end. There are more ways than ever to make a meaningful, tax-wise impact for families living with PWS:

❄️ Qualified Charitable Distributions (QCDs): If you’re 70½ or older, you can give directly from your IRA - tax-free.
❄️ Donor-Advised Funds (DAFs): Recommend a grant and amplify your impact.
❄️ Stock Gifts: Avoid capital gains while supporting a cause that matters.
❄️ Beneficiary Designations: Name PWSA | USA on your retirement plan, life insurance, or investment account.

Every gift, big or small, helps families today and brings us closer to breakthroughs tomorrow. 💙🩵

Want to learn more about planned giving opportunities? Email development@pwsausa.org. And give the gift of hope through December 31st at www.pwsausa.org/angel-drive-2025.

11/20/2025

This year we're celebrating 50 years at PWSA | USA. We've grown an incredible amount over the years, continuously increasing the number of families and individuals with PWS we help support. According to The Gathered View, Volume III, No. 6, in 1977, our organization had 262 members!
While we no longer have official memberships, we do send out the Pulse, a biweekly email newsletter and the descendant of The Gathered View, to almost 16,000 emails.

Check out this issue of The Gathered View athttps://www.pwsausa.org/wp-content/uploads/2022/01/1977_-Vol-III-N6-Nov-1977.pdf

Join our Pulse email newsletter at https://www.pwsausa.org/join-newsletter/

11/19/2025

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

11/18/2025

Carrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS.

This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is an important and beautiful episode, for its rawness, the vulnerability and willingness of the parents to share their stories, and the reality of the challenges they face when it comes to employment, relationships, obtaining services, and mental health which Annie says is, “the hidden casualty of my life.”

Please listen with care:

If you are caregivers for young individuals with PWS, this episode is likely not for you. It is important to remember that PWS affects each family differently and that the landscape of treatments and services continues to change.

Listen to this episode on your favorite podcast platform or at https://pwsunited.podbean.com/e/ep67-broken-systems-enduring-love-single-caregivers-series/

11/18/2025

Thanks to the generosity of an anonymous donor, PWSA | USA is excited to bring back Operation Holiday Cheer for 2025! 💙 This program provides gift cards to help ease holiday expenses for families affected by Prader-Willi syndrome. Families can apply for themselves or on behalf of another individual/family. The deadline to submit applications is Monday, December 1, 2025, so don’t wait! Selected families will be notified by Friday, December 5.

Download the application here: https://www.pwsausa.org/operation-holiday-cheer-returns-to-support-pws-families-in-2025/
Email completed applications to info@pwsausa.org.

11/17/2025

Hope in Action - Shaping the Future of PWS 💙📽️
For 50 years, PWSA | USA has been guided by families, leaders, and visionaries who believed in a stronger future for people living with Prader-Willi syndrome. In this installment of our Hope in Action video series, parents David and Janice Agarwal reflect on the legacy that welcomed them into the PWS community and the spirit of passing the baton to the next generation - from advancing research to exploring new possibilities. Help shape the next 50 years of hope by supporting the 2025 Angel Drive: https://www.pwsausa.org/angel-drive-2025/

Address

1032 E Brandon Boulevard 4744
Brandon, FL
33511

Website

http://www.pwsausa.org/

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