PWS United

Ep 91 PWS Awareness Month is Here: How to Get Involved

Another PWS Awareness Month (May 1-31) has arrived and we're excited to continue spreading awareness, information, and support for our loved ones with PWS! In this episode, PWSA | USA's Communications, Advocacy, and Development teams share ways to get involved during PWS Awareness Month - from everyday awareness actions to fundraisers, advocacy efforts and the D.C. Fly-In.
Throughout May, be sure to join our social media platforms on Facebook and Instagram so you can share our daily PWS facts for this month. Get your PWS gear to rep awareness, create a fundraising page or event, file a Proclamation Day request using our Proclamation Toolkit, speak at your child's school, share resources with their group home, tell a coworker about our PWS United podcast, or take a friend out for coffee to tell them about your loved one. No action is too small!
Use the links below to check out all of the awareness month resources on our resource hub webpage or read our detailed blog on the many different actions you can take this month. 
No matter how you spread awareness, your work to share the realities of PWS are appreciated. We're here to support you and your loved one with PWS. Happy PWS Awareness Month!
 
Get in touch with us:
communications@pwsausa.org
Advocacy@pwsausa.org
development@pwsausa.org
info@pwsausa.org
 
Helpful links:
PWS Awareness Month Hub
PWSA | USA on Facebook
PWSA | USA on Instagram
United in Action - Click Here to Take Action!
3rd D.C. Fly-In - Click Here to Find our Legislative Ask Documents
Find Your Legislator Locator Website
Advocacy & Awareness Webpage
 
PWSA | USA is available for the PWS community 24-hours a day, 365 days a year. If and when you need support, please reach out to us. You can call us at (941) 312-0400 or email info@pwsausa.org. We are here for you every step of the PWS journey.
 
Intro Music: https://www.bensound.com/  License certificate #2242442  
Music: www.purple-planet.com 

Ep90 Staying Curious: Continuing the Equity Conversation

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.

Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
 
Pulse Header 
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. 
 

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

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 
 

Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
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 EndocrineResearch@seattlechildrens.org 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.

Ep86: Homeschooling, The Ins and Outs of Educational Choice

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:
Researching curriculum: https://cathyduffyreviews.com/
Oak Meadow | K-12 Homeschool Curriculum & Distance Learning
 
General information: https://www.homeschool.com/
Laws by state: https://www.homeschool.com/articles/state-homeschooling-laws/
Homeschool laws by state: Homeschool Laws By State
The Way They Learn - Cynthia Tobias is a quick easy read that helps parents realize how their child learns.

Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices on Vykat 3

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
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.

Ep84: Welcoming PWSA | USA's Equity Committee

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
 

Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities

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.

Ep82: Kady Sweeney: See the Potential, Savor Typical Moments

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