In this episode, we introduce PWSA | USA’s newly formed Equity Committee and some of the members. We discuss the importance of an equity committee, who’s been missing from the conversations, data, research, and services, and how involving families from marginalized communities is essential to our organization and our humanity. We talk about health equity, the different dimensions of diversity, how and why to have these difficult conversations, and how families can help support equity at home.

Joining Anne Fricke, PWSA | USA's communications coordinator, for this conversation are Tracy Chin, PWS parent and RN working in community-based transitional care; Ashish Rishi, founder and CEO of Unwritten Health; Dini Rao, PWS parent, community organizer and PWSA board member; and PWSA's CEO, Stacy Ward. 

Links:

Solidarity and Spice: https://give.pwsausa.org/event/solidarity-and-spice/e758863

Donate to PWSA | USA’s Equity Committee. Follow the link to donate and clarify in your donation that you would like the money to go to the Equity Committee: Donate - Prader-Willi Syndrome Association | USA

Implicit Bias Test: Take a Test

So You Want to Talk About Race: So You Want to Talk About Race used book by Ijeoma Oluo: 9781580058827

Tracy: In terms of equity books, I highly recommend this one: "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist": Being Heumann | Personal Story & Fighting Education | Judithheumann 

This isn't a book, but the documentary "Crip Camp" is really good as well!: Crip Camp | A Disability Revolution

Ashish: One book I can definitely recommend is: Reigniting the Human Connection: A Pathway to Diversity, Equity, and Inclusion in Healthcare - its a really good book about how a clinic in US made themselves more inclusive.: Reigniting the Human Connection — Dr. Jennifer Mieres

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

24 Hour Crisis Line: 941-312-0400

Pulse Header

Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA

Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA

NUTRITIONAL-PHASES.pdf

Resources: Diet and Nutrition - Prader-Willi Syndrome Association | USA

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Swallowing in Prader-Willi Syndrome

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

Events | Fundraisers

Prader Silly: A Night of Rare Laughs - Campaign

Events from March 21, 2020 – September 12, 2020 – Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Podcast

Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | PWS United

Advocacy

Rare Disease Advocacy in the PWS Community - Prader-Willi Syndrome Association | USA

Reflections from Rare Disease Week on Capitol Hill 2026 - Prader-Willi Syndrome Association | USA

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

Family Support

We're Here: Then, Now, Always! Developmental Disabilities Awareness Month - Prader-Willi Syndrome Association | USA

Play-based Assessment for Preschoolers: If you have questions, please email [email protected] or call 216-368-0112. Visit the website at https://caslabs.case.edu/dimitropouloslab/. Fill out the eligibility form at

 PRETEND Program for Preschoolers Eligibility Form

Ask Nurse Lynn: Nutrition Guidelines and a Group Home - Prader-Willi Syndrome Association | USA

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

Research

Aardvark Therapeutics Announces Voluntary Pause of Phase 3 HERO Trial in Prader-Willi Syndrome – Fri, 02/27/2026 - 16:05

PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA

Response to Anesthetic Survey: REDCap

Social cognition study: If you have questions, email [email protected] or call 216-368-0112. Submit interest at Assessing Play & Creativity Study - Interest Form

TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today

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.

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. She spoke with Kady Sweeney, sister to Klara (15, living with PWS). Kady shares the memory of when she realized PWS was not a typical experience. Finding the moments to laugh and the importance of the typical moments with a loved one with PWS. Kady's mission is for people outside of the rare disease community to recognize the potential of individuals with PWS. She also shares her vision of the future for her sister and others with PWS and how she plans to be a part of it. 

Learn more about Prader-Willi syndrome and PWSA | USA 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

Pulse Header

National Caregivers Day: The Real Job Description - Prader-Willi Syndrome Association | USA

Spotlight on PWS

"Uncle Dan" Helping to Feed the Community - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA

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

Events | Fundraisers

PWS Community Day Registration (North Carolina) Survey

Donate to Mermaid Marathon

PWSA Fundraising Pages - Campaign

Podcast

Ep80: What's in Store for PWSA | USA in 2026? | PWS United

Advocacy

Underserved People in the PWS Community: Who Are They and How Can We Help? - Prader-Willi Syndrome Association | USA

Home | Colors Of Hope

Family Support

Why It Matters to Belong and It’s Important to Matter - Prader-Willi Syndrome Association | USA

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

Ask Nurse Lynn: Recovery and Weight Loss After Surgery - Prader-Willi Syndrome Association | USA

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

Research

HERO Trial Webinar: Webinar Registration - Zoom

TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today

Announcements

PWSA | USA Board of Directors Member Spotlight: Jeffrey Covington - Prader-Willi Syndrome Association | USA

PWSA | USA Board of Directors Member Spotlight: Dini Rao - Prader-Willi Syndrome Association | USA

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.

In this New Year kickoff episode of PWS United, we're sharing an inside look at what’s in store for PWSA | USA in 2026. After reflecting on the organization’s momentum coming out of its 50th Anniversary year, our podcast co-host Carrie interviews several staff members to ask one simple question: What are you most excited about working on this year?

Listeners will hear highlights about upcoming programs, expanding resources, social media initiatives, community events, and the passion fueling the work ahead. This episode offers a preview of the plans, priorities, and people dedicated to supporting individuals with Prader-Willi syndrome and their families in the year to come.

Adults with PWS Advisory Board webpage

PWS Spanish Support Group: PWSA | USA Apoyo en Espaol

2026 Residential Providers Conference

2026 Moms' Retreat

2026 D.C. Fly-In

PWS Rare Aware Art Share - Submissions due by March 15th!

PWS Hope United Peer-to-Peer Fundraising

Contact us if you're interested in hosting an event in 2026: [email protected]

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]