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

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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

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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

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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

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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. 

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

24 Hour Crisis Line: 941-312-0400

Gala

Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA - Prader-Willi Syndrome Association | USA

Tribute Video: Celebrating 50 Years of PWSA | USA!

PWSA | USA's Journey of Hope Gala Photo Gallery

PWSA Memory

1987_Vol-XIII-N4-Jul-Aug-1987.pdf

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

Events | Fundraisers

2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Calling Missouri PWS Families! - Prader-Willi Syndrome Association | USA

Calling Indiana PWS Families! - Prader-Willi Syndrome Association | USA

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

Family Support

Intervening with a Bully, One Family’s Experience - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Stretch Marks with Estradiol - Prader-Willi Syndrome Association | USA

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

Research

TREND Community - Prader-Willi Syndrome Association | USA

2025-Whats-TRENDing-Birth-Stories-and-PWS.pdf

Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met - Prader-Willi Syndrome Association | USA

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

www.heroforpws.com

HERO Informational Webinar Registration: Webinar Registration - Zoom

HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE) - Prader-Willi Syndrome Association | USA

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

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Therapeutic-Interventions-2011.pdf

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We are beginning a new 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 Elaine Towle, PWSA | USA Advocacy Specialist and mom to Jim (39, living with PWS), is with Rockie Penta. Rockie is the younger sibling of Victor Penta, a man well-known in the PWS community. Victor is on PWSA | USA's Adults with PWS Advisory Board and has traveled to DC to advocate for the PWS community. 

Rockie shares how she speaks up for Victor when needed, sharing time with her parents to avoid burn out, how she navigated PWS growing up and what it looks like now to have him as a roommate and live-in uncle to her children. Spoiler alert, it seems to be going well!

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!

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

24 Hour Crisis Line: 941-312-0400

Gala Live Auction

PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION

50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf

PWSA Memory

1982_Vol-VIII-N5-Sept-Oct-1982.pdf

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

Events

PWSA | USA's 50th Anniversary: Journey of Hope Gala - Campaign

Fundraisers

2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA

Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign

Answers for Audrey - Campaign

Prader-Silly: A Night of Rare Laughs - Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Rising Star in the PWS Community and Beyond - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

2024-Rare-Roadmap_Rare-Research.pdf

Global PWS Registry - Prader-Willi Syndrome Association | USA

TREND Community - Prader-Willi Syndrome Association | USA

Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA

Family Support

Adults with PWS: Living a Happy, Healthy Life - Prader-Willi Syndrome Association | USA

C15 Foundation – Where Unlimited Potential Can Grow and Thrive

Affecting Sleep with PWS - Prader-Willi Syndrome Association | USA

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

Research

Parent perceptions of genetic diagnosis in the inpatient setting in the neonatal intensive care unit (NICU), pediatric intensive care unit (PICU), and cardiac care unit (CCU)

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

Seattle, Washington

www.heroforpws.com

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

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

NICU-Booklet-Rebranded-2022.pdf

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Direct Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day.

This week our CEO, Stacy Ward, sat down with three DSPs from the community to discuss what it is like working with individuals with PWS, how these individuals affect their lives, advice they have for DSPs coming into the community, and more. DSP Week comes every September, but we encourage our families to celebrate and appreciate their DSPs throughout the year. Thank you, DSPs! 

Read more about Direct Support Professionals Week at In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA

Learn more about Prader-Willi syndrome at www.pwsausa.org

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