PWS United

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 neurodevelopmentresearchlab@gmail.com 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 neurodevelopmentreasearchlab@gmail.com 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. Episode Links:
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: hopeunited@pwsausa.org Intro Music: https://www.bensound.com/  License certificate #2242442 Other Music: Purple Planet Music | Moment of Inspiration

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 africke@pwsausa.org 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
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.

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