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

24 Hour Crisis Line: 941-312-0400

Pulse Header

Residential Providers Conference - Prader-Willi Syndrome Association | USA

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

PWS Rare Disease Day-15 Ways to Raise Awareness

Share Your Rare Story - Prader-Willi Syndrome Association | USA

Events | Fundraisers

Plunge for PWS - Campaign

Email Anne at [email protected] to be challenged.

Family Zoo Day - Miami | Prader-Willi Florida Association

PWSA | USA EVENTS Webpage

PWSA Fundraising Pages - Campaign

Podcast

Ep78: Miriam Chernick: Educating the Community | PWS United

Home - Global Prader-Willi Syndrome Registry

Advocacy

Congress Passes Five-Year Reauthorization of the Rare Pediatric Disease PRV Program! - Prader-Willi Syndrome Association | USA

Official Super Bowl 60 Game Program

PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA

PWA of PA Member Questionnaire

Family Support

Nasogastric and Gastric Feeding Tubes: What, Why, and When They Are Needed - Prader-Willi Syndrome Association | USA

PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Behavior and Medications for Adults - Prader-Willi Syndrome Association | USA

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

Research

Home - Global Prader-Willi Syndrome Registry

Announcements/Resource Spotlight

Stephanie Elizabeth Pircher Obituary (2026) - Windsor, MO - Hadley Funeral Home - Windsor

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

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.

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 Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that has changed over the years, deciding when to speak up for him and when to let him speak up for himself, her concerns for his aging, and how she sees sibling advocacy as educating the community. She also talks briefly about her book, The Zuzu Secret. The Zuzu Secret "told in alternating points of view, is about Josie, a 12-year-old aspiring veterinarian, and Abe, her 15-year-old baseball-loving brother born with a rare disease called Prader-Willi syndrome, as they learn the risks of keeping secrets and the value of family while staying true to their dreams."

Use the link to learn more and purchase your copy of The Zuzu Secret:

The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator

This episode focuses on mental wellness, with guest Denise Rickenbach MA LMFT LADC.

Denise is an Adlerian-trained Licensed Marriage and Family therapist as well as a Licensed Alcohol and Drug Counselor (LADC). Denise’s interests include addiction, codependency, family systems, anxiety, depression, obsessive compulsive disorder, grief, life transitions, and strained relationships. She was a speaker at the 2025 United in Hope conference and is the sister of PWSA | USA's beloved family support coordinator – Kristi Rickenbach.

Kristi and Denise both joined Carrie and Anne on this episode on mental wellness to talk about what addictive behavior may look like and why parents of individuals with disabilities are perhaps more likely to develop these. They also discuss caregiver burden, setting limits – why and how, negative comparison vs perspective taking, disenfranchised grief, and more.

Links to resources mentioned in the podcast:

Caregiver Burden and Alcohol Use in a Community Sample - PMC

The Michelle Chalfant Show — Life from the Adult Chair - Podcast - Apple Podcasts

The Anxious Generation — from a book to a movement

Addiction Expert, Speaker and Best-selling Author Dr. Gabor Maté

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

[email protected]

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.

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 [email protected]

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 

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

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 

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

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: [email protected] 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