PWS United

Ep73: Stacy's End of Year Message

2025 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research.
This episode is a message from PWSA | USA CEO Stacy Ward about the incredible work done by PWSA | USA staff, volunteers, and supporters throughout this past year, along with our deep and heartfelt gratitude.
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com

Ep72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-Up

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
Stacy’s Thank You Message
Hope in Action - YouTube
PWSA Memory
PWSA Library - Prader-Willi Syndrome Association | USA
Events | Fundraisers
Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida
Inicio - Asociación del Síndrome de Prader-Willi | Florida
A Bow for Áine Mirella: A Night of Music, Joy, and Hope for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA
Claus for a Cause Thank You Message
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Podcast
Ep71: Christian Garzia: Humor, Fairness, and Protection | PWS United
Advocacy
PWSA | USA at the EveryLife Community Congress: Looking Back at 2025 and Mobilizing for 2026 - Prader-Willi Syndrome Association | USA
Family Support
Adapting Holiday Traditions for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA
Melanie's Air-Fryer Chanukah Latkes (PWS-Friendly Potato Pancakes) - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Group Home Placement - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Reflections on the End of a Trial - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Tips and Techniques for a Safe Holiday Season - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep71: Christian Garzia: Humor, Fairness, and Protection

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

Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships Study

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: eschmitt@chomepgh.org 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 

Ep69: Joe Gill: Inclusion, Purpose, and the Little Things

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 
 

Ep68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research Spotlight

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:Email pwsaorwa@gmail.com by December 3, 2025 to RSVP.
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!For questions, email advocacy@pwsausa.org.To sponsor this event, email development@pwsausa.org.
Operation Holiday Cheer
Click Here to Submit an ApplicationDeadline to submit an application is Monday, December 1, 2025. Email info@pwsausa.org with any questions.
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
Intro Music: https://www.bensound.com/  License certificate #2242442 
 

Ep67: Broken Systems, Enduring Love, Single Caregivers Series

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 

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude

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 

Ep65: Grit, Grace, and Family, Single Caregivers Series

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

Ep64: Henry McDonald: Dynamic Duo, Superhero

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