PWS United

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
 
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 

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

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, WashingtonSeattle Children's HospitalContact: Isabella Niu, MD / Stephanie PurdyPhone: (206) 987-2640Email: stephanie.purdy@seattlechildrens.org
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
Intro Music: https://www.bensound.com/  License certificate #2242442 

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
 
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
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 Hope Celebration - Campaign
Hotel Options: Where Can We Take You? | Endless Experiences & Top Locations | Marriott Bonvoy
Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD - Prader-Willi Syndrome Association | USA
Journey of Hope Gala Honoree Spotlight: Janalee Heinemann - Prader-Willi Syndrome Association | USA
Fundraisers
Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Calling Minnesota PWS Families - Prader-Willi Syndrome Association | USA
Calling Montana PWS Families - Prader-Willi Syndrome Association | USA
Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
Grandparent Perspectives - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Glucose Monitoring - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
VYKAT XR FAQ for Parents
Social Skills in Children with Prader-Willi Syndrome: A Survey of Caregivers | QuestionPro Survey
KKrukowski1@thechicagoschool.edu
Harmony Biosciences TEMPO Trial Webinar Recording: Harmony Biosciences TEMPO PWS Study Webinar
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Gainesville, FloridaUF Shands Childrens HospitalContact: Jennifer Miller, MDPhone: (352) 294-8229Email: millejl@peds.ufl.edu
www.heroforpws.com
Recursos in Espanol:
"Hoja de información del estudio clínico HERO"
"El ensayo HERO" 
una folleto "Estudio HERO"
 
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications
Announcements/Resource Spotlight
Sleep Summit - Prader-Willi Syndrome Association | USA 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.
Intro Music: https://www.bensound.com/  License certificate #2242442 

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 awareness.
Submit your podcast topic idea to pwsunitedpodcast@gmail.com or communications@pwsausa.org 
Are you a single parent and caregiver willing to talk with others on the podcast about your experiences? Please send an email to one of the above emails. 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects. 
Intro Music: https://www.bensound.com/  License certificate #2242442 

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 syndrome 4 years of age and older. Anish, Kristen, and Dorothea discuss the unique obstacles they faced along the way to FDA approval and how the company and our PWS community overcame those hurdles. They also discuss the importance of advocacy in obtaining FDA-approved treatments, the experience of finally receiving approval after a long journey, and how Soleno is ensuring access and affordability to VYKAT XR, while also helping families educate and engage with their medical professionals. 
 
What are Anish and Kristen’s messages of hope for the PWS community? Listen to this episode of PWS United to find out. 
 
Links:
 
https://www.vykatxr.com/