PWS United

Today’s episode features two more members of our new equity committee, Wordna Meskheniten and Dhivya Venkataraman, along with PWSA CEO Stacy Ward, PWSA Board Member and PWS mom, Dini Rao, and Marketing and Communications Coordinator and PWS mom Anne Fricke. Wordna and Dhivya bring thoughtful insight, experience, and an impressive array of education and work experience to this conversation on how people’s identifiers, on top of a diagnosis of Prader-Willi syndrome, may affect their experiences in the school setting and beyond.

This episode touches on the ideas of equity journeys, equity as an everyday practice, the dehumanization of specific identities and how privilege plays a role in that. PWS does not recognize barriers of biological sex, race, gender identity, ethnicity, sexual orientation, income level, faith, or where in the world someone is born. It is found in every community. The power we have to enact change, to advocate for better services, to demand treatment options, is in the community that we have and that we create, and that community includes everyone touched by PWS.

Sometimes people may fear that they will lose something in the implementation of equity initiatives -- that somehow, by opening the circle, they will be pushed out. But circles can continue to grow. Promoting and supporting equity initiatives does not take away from people, does not exclude people, it opens up the circle and invites more people in.

So we invite you into this conversation, ask you to stay curious, and join us as we explore equity and PWS.

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

24 Hour Crisis Line: 941-312-0400

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Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life - Prader-Willi Syndrome Association | USA 

Occupational Therapy, Parent Perspective - Prader-Willi Syndrome Association | USA 

Spotlight on PWS 

Diving in to Volunteering - Prader-Willi Syndrome Association | USA 

Share Your Story - Prader-Willi Syndrome Association | USA 

Resource Spotlight 

Treatment Approaches for Prader-Willi Syndrome 

PWS Awareness Month 

PWS Awareness Month - Prader-Willi Syndrome Association | USA 

United in Action - Campaign 

Events | Fundraisers 

Magnolias & Mimosas - Campaign 

PWS Community Day Registration (Miami) Survey 

Miami_PWS_Community_Day_Digital_Invite.pdf 

PWSA Events 

Podcast 

Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United 

Advocacy 

Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom 

Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom 

Family Support 

Living Between Diagnoses: Hunter’s Journey with Prader-Willi Syndrome and Autism - Prader-Willi Syndrome Association | USA 

Ask Nurse Lynn: Cataplexy Evaluation - Prader-Willi Syndrome Association | USA

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

Research 

Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS 

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

PWS Clinician Information Collection Form - 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. 

One year ago, on March 26, 2025, the PWS community reached a landmark milestone with the FDA approval of VYKAT XR - the first-ever treatment for hyperphagia in PWS. But what happens after approval? How do families actually access the therapy? In this episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to answer exactly that.

PANTHERx is the distributing pharmacy for VYKAT XR, and their approach goes far beyond simply filling prescriptions. The team walks us through the PANTHERx Rare Care Model, explains the difference between a rare pharmacy and a specialty pharmacy, and shares how they personally get to know each family's unique needs, including guiding them through the insurance appeal process every step of the way.

PWSA | USA is grateful for the meaningful relationship we've built with the PANTHERx team and their dedication to our community. We hope this conversation serves as a helpful resource for families who may be navigating the world of rare pharmacy for the first time and leaves you feeling a little more informed and empowered along the way.

Episode Resources:

PANTHERx Rare Pharmacy Website

About VYKAT XR

VYKAT XR FAQ for Parents and Caregivers

PWSA | USA Blog - Reflections from PWSA | USA's Visit to PANTHERx Rare Pharmacy

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

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2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Understanding Prader Willi Syndrome & Autism

Events | Fundraisers

PWS Roadshow: Events | PWSA-OR-WA.ORG

PWS Community Day Registration (Miami) Survey

Miami_PWS_Community_Day_Digital_Invite.pdf

PWSA Events

Podcast

Ep86: Homeschooling, The Ins and Outs of Educational Choice | PWS United

Advocacy

HUD Changes Eviction Notice Rules for HUD-Assisted Housing - Prader-Willi Syndrome Association | USA

Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom

Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom

Family Support

Growing up with PWS: A Sibling's Story - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Behavioral Outbursts and Psychiatric Support - Prader-Willi Syndrome Association | USA

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

Research

A Message from Soleno Therapeutics: Reflecting on One Year of VYKAT XR - Prader-Willi Syndrome Association | USA

Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS

Tirzepatide Study: Contact the Endocrine Research Team at [email protected] or 206-987-2540, or visit Study Details | NCT06901245 | Tirzepatide in PWS, HO and GNSO | ClinicalTrials.gov

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

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.

Our guest today, Julie Casey, mom to Ryan (22, living with PWS), shares her knowledge and experience from homeschooling. The intention of this episode is to shed light on the topic and personal experience of homeschooling with PWS. We offer information so that families in our community, of all configurations (and Julie gets into that), can make informed choices about how their children with PWS are educated. We discuss how to decide if homeschooling is the right decision, or something you’d like to try, the different ways to homeschool, how to find credible information, curriculum, and resources, what it looks like to receive services, and building a homeschooling community. This episode is packed full of information, anecdotes, and, perhaps, inspiration to get you started.

Links:

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

24 Hour Crisis Line: 941-312-0400

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Spotlight on PWS

PWSA | USA Rare Aware Art Share: Theme #1 Gallery

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

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Swallowing in Prader-Willi Syndrome

Events | Fundraisers

Solidarity & Spice - Campaign

You're Invited to Solidarity & Spice: A Message from Dini Rao

PWANY 2026 Conference

PWSA Fundraising Pages - Campaign

Podcast

Ep84: Welcoming PWSA | USA's Equity Committee | PWS United

PWSA | USA Media Submissions - Prader-Willi Syndrome Association | USA

Advocacy

Prader-Willi Syndrome (PWS): A Rare Condition With Everyday Challenges

Rare Diseases by Mediaplanet_USA - Issuu

Prader-Willi Syndrome (PWS): A Rare Condition With Everyday Challenges - Future of Personal Health

Family Support

Finding a Viable Treatment for Excessive Daytime Sleepiness Through the TEMPO Trial - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Dissociation and PWS Mental Health - 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

The FOCUS project

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

Announcements

PWSA | USA Board of Directors Member Spotlight: Tina Ihlenfeld - 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 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

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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.