PWS United

Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
 
Rare Aware Art Share
Rare Aware Art Share Back for 2026: PWS Advocacy and Awareness - Prader-Willi Syndrome Association | USA
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Events | Fundraisers
Clint Hurdle Hot Stove Dinner Hub - Prader-Willi Syndrome Association | USA
PWSA | USA EVENTS Webpage
PWSA Fundraising Pages - Campaign
Podcast
Ep75: Global PWS Registry 2.0 | PWS United
Home - Global Prader-Willi Syndrome Registry
Advocacy
PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA
D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA
Rare Disease Week - EveryLife Foundation for Rare Diseases
Rare Disease Week 2024
Colors of Hope: Webinar Registration - Zoom
PWSA NJ Registry Update
Family Support
How Individuals with PWS Can Use Social Media Safely - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Hemoglobin Levels - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Harmony Biosciences Guides to Over $1 Billion in WAKIX® Revenue in 2026; Advancing Robust Late-Stage Pipeline With Potential for Long-term Value Creation | Harmony Biosciences
Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline)
Shedding Light on Sleep Disorders in Prader-Willi Syndrome | January 29, 2026
TREND Connect
Announcements/Resource Spotlight
info@pwsausa.org
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
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.

Ep75: Global PWS Registry 2.0

The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community. 
Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa Strong, Director of Research for FPWR, Dr. Jessica Bohonowych, Associate Director of Research for FPWR, Lisa Matesevak, Study Coordinator for FPWR, and Lynn Garrick, Medical/Research Coordinator for PWSA | USA.  They discussed the many surveys available and the importance of gathering this data from families. Not only are these surveys helping to inform the medical and research community on the many nuances of PWS, but it can also serve as a living medical record for families. The Global Registry has been updated to a more intuitive platform, making it easier for families to complete surveys and view the information submitted by the community. They also discuss the exciting implications for the upcoming VYKAT survey which will help document in real-time the effects of the first-ever FDA approved treatment for hyperphagia in PWS. 
To learn more and sign up for the registry, please visit Home - Global Prader-Willi Syndrome Registry
If you have questions, contact Lisa Matesevak or Jessica Bohonowych at info@fpwr.org

Ep74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
 
Events | Fundraisers
D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA
2026 Residential Providers Conference - Prader-Willi Syndrome Association | USA
2026 Moms' Retreat - Prader-Willi Syndrome Association | USA
2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
PWSA Fundraising Pages - Campaign
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Angel Drive
Hope in Action: Where Community Becomes Family — Annie’s Story
Hope in Action - YouTube
Podcast
Ep73: Stacy's End of Year Message | PWS United
Advocacy
Rare Disease Week - EveryLife Foundation for Rare Diseases
Rare Disease Week 2024
Family Support
Sibling Spotlight: Ella Frazier’s Heart for Service - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: PWS BMI Ranges - Prader-Willi Syndrome Association | USA
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
PWSA | USA’s 2025 Research Year in Review - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Exercise, Movement, and Mental Health - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 

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