PWS United

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. 

Learn more about Prader-Willi syndrome and PWSA | USA at

www.pwsausa.org

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

24 Hour Crisis Line: 941-312-0400

In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA

Angel Drive

Angel Drive 2025 - Prader-Willi Syndrome Association | USA

Stacy’s Thank You Message

Hope in Action: Carol's Story

PWSA Memory

1997_Vol-XXII-N4-Sept-1997.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events | Fundraisers

Claus for a Cause Thank You Message

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea's Journey with PWS - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Podcast

Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United

Advocacy

A Milestone for Hope: U.S. House Passes the Give Kids a Chance Act - Prader-Willi Syndrome Association | USA

Family Support

Reflections from PWSA | USA’s Visit to PANTHERx Rare Pharmacy - Prader-Willi Syndrome Association | USA

Adoption Spotlight for Santino, contact: [email protected] or 412-441-4484

Ask Nurse Lynn: Testosterone and Low LH - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

HERO Study for Treatment of Hyperphagia in PWS

PWS-PARTICIPANTS-NEEDED.pdf Flyer for adult with PWS relationship study

Pre-screening Survey for adults with PWS for relationship study

New Research Study Seeks Caregiver Insights on Hyperphagia in PWS - Prader-Willi Syndrome Association | USA   

Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp

Screening Questionnaire for the Study Titled: The Effects of a Caregiver-Implemented Power Card Strategy on Social Play Skills in Children with Prader-Willi Syndrome | QuestionPro Survey

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Announcements/Resource Spotlight

Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/  License certificate #2242442 

Welcome to another episode in our podcast series, Sibling Advocacy, where we speak with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. 

Today's episode, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, an almost 20-year-old living with PWS. Joe talks about growing up with PWS in the house, what inclusion looks like for Gavin, the need for opportunities for adults, and offers some advice for other siblings on this journey. In 2022, as part of raising funds and awareness, Joe ran the Boston Marathon. 

With a diagnosis as challenging as PWS can be, we hope families will find this episode, and this series, refreshing and insightful. Thank you to all the siblings advocating and showing up for their loved one with PWS!

Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org

Intro Music: https://www.bensound.com/  License certificate #2242442 

The latest in PWSA | USA events and PWS news in advocacy, family support, and research.

24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays.

Preparing for the Holidays Blogs/Resources:

Celebrate Thanksgiving Safely

Tips and Techniques for a Safe Holiday Season

Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs

A Letter to Friends and Family

PWSA Memory:

September 1997 edition of The Gathered View

Spotlight on Hope:

Share your submission!

2025 Angel Drive Campaign:

Click Here to Make an Impact

Hope in Action Video - Shaping the Future of PWS

Save the Date: Giving Tuesday is Tuesday, December 2, 2025 - DOUBLE your impact when you give to the Angel Drive on that date!

PWS Christmas Experience near PDX:

Prader Silly:

Event Photo Gallery (Photo credit: Taylor Brown | @word.doc_brown)

Claus for a Cause:

Register for Claus for a Cause

Bid on Claus for a Cause Silent Auction Items

Donate to Claus for a Cause

D.C. Fly-In - Applications for the 2026 D.C. Fly-In will open soon!

Operation Holiday Cheer

Click Here to Submit an Application

Prader-Willi Syndrome and Diabetes

Click Here to Read the Blog Article

¡Anuncio! Nuevo Grupo de Apoyo en Español

Únete Aquí

Ask Nurse Lynn

PWS and Aging Response Article

Submit Your Own Non-Emergency Question about PWS

TREND Community and PWS Connect on Discord

Click Here to Learn More

Join the conversation today! Interested? Email interested@tren​d.community and we’ll send you a private link to join PWS Connect on Discord!

Research Spotlight

Harmony Biosciences TEMPO PWS Clinical Trial

PWSA | USA Resource Spotlight

Central Adrenal Insufficiency Screening with Morning Plasma Cortisol and ACTH Levels in Prader-Willi syndrome

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.

For more information on Prader-Willi syndrome, please visit www.pwsausa.org

24 Hour Crisis Line: 941-312-0400

Intro Music: https://www.bensound.com/  License certificate #2242442 

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

24 Hour Crisis Line: 941-312-0400

Angel Drive

Angel Drive 2025 - Prader-Willi Syndrome Association | USA

Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy

PWSA Memory

1993_Vol-XVII-N5-Sept-Oct-1993.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events | Fundraisers

Claus for a Cause - Campaign

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: The Story of George - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Calling Iowa PWS Families for P&T Committee - Prader-Willi Syndrome Association | USA

Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA

Understanding P&T Committees and DUR Boards - Prader-Willi Syndrome Association | USA

Wisconsin Families: We Need Your Voice to Support SB 203 - Prader-Willi Syndrome Association | USA

Family Support

Operation Holiday Cheer Returns to Support PWS Families in 2025 - Prader-Willi Syndrome Association | USA

Respite & Relationship: PWS Moms’ Hiking Weekends - Prader-Willi Syndrome Association | USA

Community Collectives: Creating Support for Caregivers - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Preventing and Treating Constipation - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

2025_11_03_Whats-TRENDing-Community-Themes-and-PWS.pdf

TREND Community - Prader-Willi Syndrome Association | USA

Aardvark Therapeutics' HERO Clinical Trial Informational Webinar - October 15, 2025

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Strategies, Interventions, and Routines for the Prevention or Mitigation of Skin Picking in Individuals with Prader-Willi Syndrome

Intro Music: https://www.bensound.com/  License certificate #2242442 

On today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being  a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care for your loved one so you may find a piece of yourself again, or simply finding time for a much-needed nap. They also talk about how and why to give yourself grace, adapting the in-home culture to fit the needs of the family and having pride in what is created. This episode is the first of our mini-series focusing on single caregivers, and it’s a beautiful, insightful look into a few of the many ways families are formed.

Links:

Libby - Welcome

Love Is a Family book by Roma Downey

Love Is a Family: Downey, Roma: 9780060393748: Amazon.com: Books

The next episode in our podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. 

Today's episode, led by Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS). 

Henry is an insightful 14-year-old who refers to him and his sister as the "dynamic duo". He shares his perspective on PWS, how it affects the whole family, and how misinformation isn't a problem when the issue is actually a lack of information. Henry also shares candidly what it was like to advocate for Josie in a political arena, attending therapy appointments with her when he was younger, his thoughts about the future, and more. 

With a diagnosis as challenging as PWS can be, we hope families will find this episode, and this series, refreshing and insightful. Thank you to all the siblings advocating and showing up for their loved one with PWS!

Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org

Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

24 Hour Crisis Line: 941-312-0400

Prader-Silly Live Auction

Prader Silly: A Night of Rare Laughs

PWSA Memory

2001_Vol-26-N5.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events | Fundraisers

Golf | The RMC Foundation

PWSA Fundraising Pages - Campaign

Spotlight on Hope

A Halloween Party with Heart: Dancing Silly for Prader-Willi - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Cuts to Department of Education Affect Individuals with PWS – Call to Action! - Prader-Willi Syndrome Association | USA

Dr. Destiny Pacha on Instagram: Dr. Destiny Pacha (@_empowered_solutions) • Instagram photos and videos

Dr. Destiny Pacha on Facebook: EmpowerED Solutions | Facebook

Family Support

PWS Families Gather in Egypt for Nile Hope Workshop and Camp - Prader-Willi Syndrome Association | USA

PWS-Community-Day-Invite.pdf

PWS Community Day Survey

Ask Nurse Lynn: New Forgetfulness and Neurological/Psychological Concerns - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

Enrolling now VNS4PWS

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Dental-Health-in-Children-and-Adults-with-PWS.pdf

Intro Music: https://www.bensound.com/  License certificate #2242442 

Link to session material: Emotional Regulation Strategies

This episode is from a session from our International United in Hope PWS Conference and was recorded on June 28, 2025.

”Teaching Emotional Regulation in Individuals with Prader-Willi Syndrome: ABA Strategies for Lasting Success,” was presented by Kasey Bedard, PhD, BCBA-D assistant professor at The Chicago School.

Kasey discusses why emotional regulation is challenging for people with PWS, why tantrums occur, self-regulation vs co-regulation, how to teach emotional regulation skills, and more. 

This episode is another great resource for families and caregivers of individuals living with Prader-Willi syndrome. To learn more about PWS please visit www.pwsausa.org. 

Intro Music: https://www.bensound.com/  License certificate #2242442