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.

12/23/2025

PWSA | USA recently participated in the EveryLife Foundation for Rare Diseases’ Community Congress end-of-year convening in Washington, DC. This two-day gathering brought together rare disease advocates, policy experts, and community leaders to reflect on state-level legislative progress in 2025, assess emerging challenges, and begin shaping a coordinated strategy for 2026. This was a great opportunity for advocates to build connections across the rare disease community, focus on access and reimbursement issues, and also discuss obstacles and advocacy efforts moving forward.

As Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter (living with PWS) states, “Advocacy is rarely a straight line. There are moments of progress, moments of pause, and moments—like this one—that call on us to reorganize and recommit. In 2026, we will take what we’ve learned, strengthen our partnerships, and continue showing up—because access, equity, and dignity for people living with PWS are always worth fighting for.”

Read the full recap at https://www.pwsausa.org/pwsa-usa-at-the-everylife-community-congress-looking-back-at-2025-and-mobilizing-for-2026/

12/22/2025

From a time when a Prader-Willi syndrome diagnosis came with limited information and heartbreaking expectations, to a life filled with advocacy, purpose, and joy, Shawn Cooper’s story is a powerful reminder of how far hope and support can carry us.

In this Hope in Action video, Shawn and her parents, Dottie and Dale, reflect on more than five decades of living with PWS and the unwavering support of PWSA | USA throughout their journey. Diagnosed at 12, when life expectancy was once late teens/early 20s, Shawn is now 52 and proudly serving on the Adults with PWS Advisory Board, using her voice to advocate for others with a big heart and even bigger determination.

Stories like Shawn’s remind us why this work matters. Your gift to PWSA | USA’s Angel Drive helps ensure families find guidance, connection, and hope not just at diagnosis, but for a lifetime: https://www.pwsausa.org/angel-drive-2025/

Thank you 🩵💙

12/21/2025

From the organizers of Claus for a Cause:

"From the bottom of our hearts — thank you for supporting Claus for a Cause held earlier this month. Your presence, your energy, your generosity and your kindness helped create a joyful, safe and inclusive holiday celebration for our Prader–Willi syndrome community.

Seeing families connect, kids smile and our community come together in such a meaningful way is something we’ll never forget. To those that attended, we hope you enjoyed the food, activities, therapy pup, Santa photos and all the festive fun throughout the day.

Because of your support, we were able to raise essential over $20,000 for PWSA | USA, helping provide advocacy, family support, and life-changing research for individuals living with Prader–Willi syndrome.

Thank you again for being part of Claus for a Cause. It was full of heart, and that’s because of you. Wishing you and your families a happy holiday and joyful new year.

With gratitude,
Amanda, Kayla, Krysten and Maria
Claus for a Cause Host Families"

12/21/2025

On November 21, 2025, friends, family, and supporters gathered at the Main Line Unitarian Church in Devon, Pennsylvania, for an unforgettable evening: A Bow for Áine Mirella – Performance for PWS. The concert was a beautiful celebration of music, community, and love – all in support of the Prader-Willi Syndrome Association | USA (PWSA | USA). PWSA | USA's Fundraising Coach, Katie Martinez, attended the event and wrote a beautiful recap about the meaning behind the event name, the music played, and the intention behind coming to an event like this. Read Katie's recap at https://www.pwsausa.org/a-bow-for-aine-mirella-a-night-of-music-joy-and-hope-for-prader-willi-syndrome/

12/20/2025

"Hayden absolutely loves people! He's never met someone he hasn't instantly become friends with. He will ask family, friends, the grocery store cashier, etc., 'How is your day going?'; 'Did you have a good day at work?'; 'Did you have a fun weekend?' We love how friendly he is and how he really listens to people's responses when he asks them these questions. Such an amazing little boy!"

-submitted by Rebecca Woods, mom to Hayden (living with PWS)

12/20/2025

Shared on behalf of Harmony Biosciences:

As we move into the holiday season, we all look forward to the meaningful moments that make this time of year special: time spent together, family traditions, and a chance to settle into a quieter winter rhythm. For those supporting someone with PWS, the day-to-day challenges of excessive daytime sleepiness can make enjoying these moments to the fullest more challenging.

As a new year approaches, please consider taking part in the TEMPO clinical study to further research focused on excessive daytime sleepiness in PWS. With the completely at-home study option, you can contribute to PWS research entirely from the comfort of your home!

Alternatively, you may choose to participate at one of our 18 clinical study sites around the country, and be rest assured that all your travel needs are fully covered such as transportation, parking, meals.

Qualified participants:

– Are 6 years of age or older
– Have a diagnosis of Prader-Willi syndrome
– Have excessive daytime sleepiness

To learn more about the TEMPO clinical study, visit www.tempopwsstudy.com. You can find out if your child is eligible to participate by answering 7 simple questions in our eligibility questionnaire (https://tempo.longboat.com/). Please note that the questionnaire is not a complete list of eligibility requirements and completing the questionnaire does not mean that a care recipient agrees to participate in the study.

Wishing you and your family a joyful holiday season!

– The Team at Harmony Biosciences

12/19/2025

Many main-stream winter holiday traditions fall short of being PWS-friendly. From leaving cookies for Santa and hot cocoa after ice skating to gingerbread houses and deep-fried latkes, it can be challenging for some families to adapt these traditions to fit the needs of Prader-Willi syndrome. Some traditions simply need some small changes and others may need to be discarded for new ones entirely. In our latest blog, staff and volunteers share some of their practices and ideas on adapting and creating PWS-friendly holiday traditions.

Read this blog at https://www.pwsausa.org/adapting-holiday-traditions-for-prader-willi-syndrome/

12/18/2025

Melanie Zalman, PWSA | USA's Director of Development and mom to Josephine (living with PWS), shares her adapted recipe for latkes, a Hanukkah tradition for her family. As Melanie writes, "When Josephine was born, I worried a lot about what our Jewish holiday traditions would look like and how (more like IF) I would be able to make them PWS friendly. When she began to eat solid food, I made the decision that I would do my very best to find healthy alternatives to my traditional holiday treats so that she could enjoy the tastes of the season with the rest of us. I still work each season to refine things and to adopt healthier alternatives for the whole family."

You can read more from Melanie and find this recipe at https://www.pwsausa.org/melanies-air-fryer-chanukah-latkes-pws-friendly-potato-pancakes/

12/18/2025

As we close out our 50th Anniversary year and turn the final corner for our 2025 Angel Drive Campaign, we wanted to look back at some of the fundraising memories of PWSA | USA.
In 1979, The Gathered View announced the beginning of the fundraising discussion, emphasizing the growth of the organization and the need to raise funds to support the work. Up until this point, Gene and Fausta Deterling, co-founders of this organization, were handling all the paperwork. Then fundraising chairman for PWSA, Marge. A. Wett asked the question, “What have we done as an organization and as individuals?...If I am going to be successful as a Fund Raiser for the National Organization, I need a Board of Directors, and a full membership that is doing their part.”
In 1989, The Gathered View announced the launch of the annual “Be an Angel” fundraiser with the opportunity to receive $10,000 in matching funds if the goal was met.
The 1999 Gathered View celebrated donors for the various tiers of the Angel Fund, those being Gabriel, Heavenly Angel, Arch Angel, and Cherub.
In 2009, PWSA sadly announced the cancellation of the 2010 conference. This was due to effects of the recession; decrease in donations, inability to secure new grants, lack of funds for families to travel to conference, diminished budgets for researchers and professionals to travel.
The 2019 Gathered View promoted that year’s Angel Drive Campaign as Growing Up Rare and stating, “Of all the things you can do to raise awareness, few are more valuable and beneficial than telling your story.”
In 2025, we are continuing the work set forth by the founders 50 years ago, with far more resources than those original families had access to. We reach families in the PWS community around the country and in many corners of the world. We offer support for families and individuals with PWS, funding for research, education to caregivers and professionals, advocacy at the highest levels, and a place for PWS families to find connection and support. We are grateful to all our donors for their generosity and contributions to the incredible work done by this organization.

12/17/2025

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

12/16/2025

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 Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. Dorothea spoke with 15-year-old Christian Garzia, the younger brother of Rocco, a 21-year-old living with PWS. Christian brings some humor to this conversation and talks about what fairness looks like in their family dynamic, why he's not worried about the future with Rocco, and how advocacy looks like protection.

Find this episode of PWS United on your preferred podcast app or at https://pwsunited.podbean.com/

12/15/2025

When Amy and Danny Reinmuller received their daughter Lilly’s (1) Prader-Willi syndrome diagnosis, their world shifted overnight. In this powerful Hope in Action story, the Reinmullers share how reaching out to PWSA | USA in those earliest days connected them to real support - through a compassionate call from Parent Support Coordinator Kristi Rickenbach, a New Diagnosis care package, research resources, and a community that helped them find their footing again.

From fear and grief to connection, knowledge, and renewed hope, Amy and Danny reflect on how attending their very first PWS conference and meeting other families brought peace in the middle of uncertainty. Their story is a reminder that no family has to face a PWS diagnosis alone and that hope, even when buried, can always be found again.

Your support makes stories like this possible. By giving to PWSA | USA's 2025 Angel Drive, you help ensure every newly diagnosed family has an organization - and community - that's ready to walk beside them: https://www.pwsausa.org/angel-drive-2025/

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1032 E Brandon Boulevard 4744
Brandon, FL
33511

Website

http://www.pwsausa.org/

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