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PODCAST

PWS United

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality

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All Episodes

35:02

Ep72 Pulse 137: End of Year Reflection, Holiday...

PWS United ·

2025/12/23

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,

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22:33

Ep71: Christian Garzia: Humor, Fairness, and Protection

PWS United ·

2025/12/16

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

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28:27

Ep70 Pulse 136: In Memory of Fausta, Give Kids a...

PWS United ·

2025/12/09

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 |

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40:44

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

PWS United ·

2025/12/02

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

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60:28

Ep68 Pulse 135: Holiday Preparation, Prader Silly...

PWS United ·

2025/11/25

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

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55:08

Ep67: Broken Systems, Enduring Love, Single...

PWS United ·

2025/11/18

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

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36:21

Ep66 Pulse 134: Angel Drive Launch, Operation Holiday...

PWS United ·

2025/11/11

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 -

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45:06

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

PWS United ·

2025/11/04

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

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33:19

Ep64: Henry McDonald: Dynamic Duo, Superhero

PWS United ·

2025/10/28

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

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36:45

Ep63: Nile Hope Workshop and Camp, Department of...

PWS United ·

2025/10/21

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

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58:45

Ep62: Teaching Emotional Regulation in Individuals...

PWS United ·

2025/10/14

Link to session material: Emotional Regulation StrategiesThis 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,

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30:01

Ep61 Pulse 132: Gala Recap, DUR Boards, TREND Journey...

PWS United ·

2025/10/07

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

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26:36

Ep60: Rockie Penta: Caregiver, Roommate, Best Friend

PWS United ·

2025/09/30

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

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38:43

Ep59 Pulse 131: Virtual Gala Auction, Care Until...

PWS United ·

2025/09/23

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

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45:16

EP58: Recognizing the Unsung Heroes of PWS

PWS United ·

2025/09/16

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

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34:36

Ep57 Pulse 130: Direct Support Professionals Week,...

PWS United ·

2025/09/09

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Direct Support Professionals Week In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA PWSA Memory The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndrome Association | USA Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of

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67:52

EP56: Celebrating One Year of Podcasting

PWS United ·

2025/09/02

PWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire new listeners to take advantage of this incredible resource for the PWS community. Share this podcast with a friend or family member to help spread PWS

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23:15

EP55: Hope, Perseverance, and Soleno's Path to an...

PWS United ·

2025/08/26

How does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment? On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi

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28:01

Ep55 (Bonus Episode!): Leave a Lasting Legacy with...

PWS United ·

2025/08/21

August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community.Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s

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29:14

EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare...

PWS United ·

2025/08/19

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Planned Giving Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA Planned Giving | PWSA USA PWSA Memory Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Journey of Hope Gala Honoree Spotlight: Dr. Dan

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