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PWS United

PWSA | USA

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA.

This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters.

Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

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#106
Wednesday · 37 min
Ep105: Spreading Love: The Life and Legacy of Karen and Her Family
PWSA | USA's Director of Community Development, Melanie Zalman, sat down with caregiver Shelley Smith to shine a light on the lasting impact of thoughtful planning, enduring love, and the legacy that one family can leave behind. We came to know Shelley through her role as caregiver to her cousin Karen (with PWS) who passed away in December of last year at the age of 68. We have begun to learn a story that spans decades of devotion, caregiving, advocacy, and planning by Karen's mom and dad, her extended family, and those who loved her the most. In this conversation, Shelley reflects on Karen's life, the commitment family made to ensuring she was cared for throughout her lifetime, and the legacy gift that will help support future generations of individuals with PWS and the people who love and care for them. Resource Links: Planned Giving | PWSA USA Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA
#105
August 18 · 28 min
Ep104: Leave a Lasting Legacy with PWSA | USA (Episode Re-Air)
This episode is a re-air from August of 2025 on the topic of planned giving and leaving a lasting legacy with PWSA. August is Make-a-Will Month, and we have some new resources, like our legacy tips, on the how and why of supporting the work of PWSA | USA through the avenue of planned giving. Thank you again to Tim Hearn, father to David (living with PWS) for an insightful and inspiring conversation on leaving a lasting legacy. Planned Giving | PWSA USA Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442
#104
August 4 · 22 min
Ep103: PWS Roadshow: Building Community, One Stop at a Time
The PWS Roadshow is a series of events throughout the Pacific Northwest, put on by the Washington/Oregon chapter of PWSA and sponsored by Soleno Therapeutics, the makers of VYKAT XR, the only FDA-approved treatment for hyperphagia. It is an opportunity to meet local PWS families, ask experts and connect with PWS professionals in the area, learn about new and potential treatments for hyperphagia, and connect with Soleno PACE for product support and resources. As Vonnie Sheadel, chapter president, host of the PWS roadshow, and mom to Bill (46, living with PWS) wrote: “Because PWS is rare, families frequently face isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards—including connecting with individuals and families who may have been missed by traditional outreach in the past.” In this episode you’ll hear from Vonnie herself, Cainan (adult living with PWS), and his mom Heather, PWS parents Joseph and Erin, and PWS United's co-host Anne and her daughter Freya (living with PWS), all talking about the Medford PWS Roadshow, along with the value and importance of creating and attending events like these. PWS Link Map | Mysite Events | PWSA-OR-WA.ORG Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com
#103
July 21 · 53 min
Ep102 Pulse 151: Disability Pride, Podcast Changes, Voices on VYKAT 6
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Join our Newsletter - Prader-Willi Syndrome Association | USA Pulse Header The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA What Does Disability Pride Month Mean to Me? - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Medical-Reference-Guide-for-Parents-Rebranded-2022.pdf Events | Fundraisers Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign Residential Providers Conference - Prader-Willi Syndrome Association | USA PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey PWSA Events Podcast Ep101: Transitioning PWS to Adulthood | PWS United Advocacy Meet Our Equity Committee: Ashish Rishi - Prader-Willi Syndrome Association | USA Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA Family Support Why We Gather - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Deconditioning After Hospital Stay - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx 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.
#102
July 14 · 53 min
Ep101: Transitioning PWS to Adulthood
PWS Moms, Jen Garzia (mom to Rocco, 22), Denise Servais (mom to Maya, 22), and Elaine Towle (mom to James, 40) share the challenges, successes, and timelines of helping their loved one transition into adulthood. Guardianship, social security benefits, day programs, and medical care are the focus of this conversation. But the thread through it all is the call for adaptability. How to shift gears, perspectives, and expectations when one solution isn’t a good fit. What it looks like when, after twenty years of following the plot line, you realize the systems in place do not comply. As PWS mom Jen Garzia says in this episode, “the systems aren’t as advanced as our kids have become.” This is not an episode on the frustrations and grief of broken and archaic systems, of a society still learning how to care for its more vulnerable members, but one of versatility, steadfastness, and the wisdom, creativity, and effectiveness of adapting. Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com
#101
July 7 · 29 min
Ep100 Pulse150: 100 Episodes, Convention, State Specific Events
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 Caribe Royale Resort | Resort in Orlando Florida | Official Site (7) Facebook Live | Facebook Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Understanding Constipation in Prader-Willi Syndrome Events | Fundraisers PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey PWS Roadshow Heading to Spokane, Washington, July 11: Summer Tour Breaks Isolation and Builds 'Instant Villages' Across the Northwest - Prader-Willi Syndrome Association | USA PWSA Events Podcast Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha | PWS United Advocacy Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA Access to Services for Individuals with PWS in Georgia Survey Family Support Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Association of Minnesota | PWSA-MN Ask Nurse Lynn: Supporting a Long Life with PWS - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx TREND Community: Shedding Light on PWS and Sleep - Understanding Cataplexy PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements PWSA | USA Board of Directors Member Spotlight: John Lens - 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.
#100
June 30 · 1 hr 8 min
Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha
This episode is loaded with important information for your school-aged loved one with PWS. Destiny Pacha, PWS education specialist and IEP consultant, gathered questions from parents and caregivers in the community about many aspects of the school experience. Topics covered include progress reports, how to re-evaluate and advocate for necessary supports, what are the non-negotiables, when to discuss extended school year (ESY) options, staff trainings, transitioning to a new classroom, school, or from summer break, addressing food security in the classroom, and more. Be sure to keep this podcast in your library as you will likely want to refer back to it again and again! Be sure to check out the many valuable resource links below. Questions for Dr. Pacha Empowered Solutions EmpowerED Solutions (@empowered_solutions_) • Instagram photos and videos Family Support Webinar: Everything You Need to Know About Extended School Year It Starts With Hello: Katie's Story About Prader-Willi Syndrome | Book Reading with Author Dr. Pacha Family Support Webinar: Creating an Individualized Health Plan Family Support: Social Stories - Prader-Willi Syndrome Association | USA Resources A-Z: Cards - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442
#99
June 23 · 41 min
Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial
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 Caribe Royale Resort | Resort in Orlando Florida | Official Site Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight How To Travel with Refrigerated Medication - PWSA USA Events | Fundraisers Mom’s Hike: 2026 Event Series pwshikingmom@gmail.com Home - DADventure Retreat PWSA Events Podcast Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United Advocacy Advocacy & Awareness - Prader-Willi Syndrome Association | USA Family Support Appreciation for Fathers and How They Show Up for PWS - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Anesthesia and Steroids - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements PWSA | USA Board of Directors Member Spotlight: John Lens - 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.
#98
June 16 · 40 min
Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission
Father's Day is almost here (June 21), and we're celebrating with two incredible dads from the PWS community. PWSA | USA's Director of Development Melanie Zalman and Fundraising Coach Katie Martinez sat down with John Lens, dad to Hunter, and Clint Hurdle, dad to Maddie. Both are proud fathers, PWSA | USA Board of Directors members, and longtime champions of the PWS community. For over a decade, John and Clint have each hosted annual fundraising events to benefit PWSA | USA: The Hunter Lens Golf Tournament and the Clint Hurdle Hot Stove Dinner. In this heartfelt conversation, they open up about their families, their loved ones' journeys with PWS, and what keeps them coming back year after year to give back to the broader PWS community. They also share personal reflections on fatherhood and offer advice for others walking a similar path. To all the dads in our PWS community, Happy Father's Day! Hunter Lens Golf Tournament Saturday, September 19, 2026 | Heritage Hills Golf Course, Lakeville, MA Learn more and register at: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873 Clint Hurdle Hot Stove Dinner Save the Date! Saturday, March 20, 2027 | Bradenton, FL Registration details coming soon at pwsausa.org.
#97
June 9 · 29 min
Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Enjoy Summer with this List of Fun Activities! - Prader-Willi Syndrome Association | USA Navigating Summer Celebrations - Prader-Willi Syndrome Association | USA Staying Safe in the Heat - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight TREND Connect Events | Fundraisers Dancing Through the Decades - Campaign Donate to Hummus & Watermelon: United We Brunch for PWS PWSA Events Podcast Ep95 Garrick Siblings: Importance of Community and Listening | PWS United Advocacy Local Moms Show Support for Prader-Willi Syndrome Awareness Day Finding the Funny Prader Silly: A Night of Rare Laughs - Campaign D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA Family Support Awareness Month Success: Thank you, PWS Community! - Prader-Willi Syndrome Association | USA Medical Stories - Prader-Willi Syndrome (PWS): Ayoni's Story Ask Nurse Lynn: NG Tube or G Tube - 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 Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life PRETEND Program for Preschoolers Eligibility Form PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements 2027 PWSA | USA United in Hope National Convention - 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.
#96
June 2 · 35 min
Ep95 Garrick Siblings: Importance of Community and Listening
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. She spoke with Hannah and Alex Garrick, siblings to John (20, living with PWS). They share a bit about their lives growing up with a sibling with PWS; the neighborhood watch, food security, and how it led them into the careers they have now. Hannah and Alex are open about the aggression they experienced from their brother and how food security was difficult, but also share the love they feel for John, the lessons they have gained from their experiences with him, and the relief and happiness that he is doing so well in his current situation. They talk about the importance of listening, both siblings to their loved one with PWS and parents to the sibling, community involvement for the individual with PWS, and how their family has approached the conversation of guardianship. Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org Intro Music: https://www.bensound.com/ License certificate #2242442
#95
May 26 · 43 min
Ep94 Advocacy is Everything: 2026 DC Fly-In Recap
PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and seeing old friends, it was a busy, but nourishing, few days. The communications team at PWSA | USA spoke with several attendees at the fly-in to hear their thoughts on what they want their representatives to take home from these meetings, moments that stood out to them, and how to describe PWS advocacy with one word. Resources: 2026-Hill-Day-Ask-Document-RDIH.pdf FDA Rare Disease Innovation Hub | FDA 2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf 2026-Hill-Day-Ask-Document-KASSA.pdf Facebook Voices That Move Policy: Recapping PWSA | USA's 2026 D.C. Fly-In - Prader-Willi Syndrome Association | USA Can't Make It to D.C.? Here's How to Advocate From Home During PWSA | USA's 2026 Fly-In - Prader-Willi Syndrome Association | USA
#94
May 19 · 48 min
Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header The Importance of PWS Awareness Day - PWSA | USA Blog Resource Spotlight Share Your Spotlight on PWS PWS Awareness Month Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE PWS Awareness Month Hub Events | Fundraisers View All Upcoming PWS Community Events Soleno Therapeutics PWS Community Day in New Jersey United in Action - PWS Awareness Month Campaign Podcast Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues Advocacy A full recap of PWSA | USA's 2026 D.C. Fly-In is coming soon! Colors of Hope Webinar - Advocating as a Person of Color in the Rare Disease Space (May 28 | 8 PM ET) RSVP to: bipocpws@gmail.com Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation - PWSA | USA Blog Calling Kansas PWS Families - PWSA | USA Blog Family Support PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog More PWS Roadshow Events Ask Nurse Lynn: Recurring Urinary Tract Infections (UTI) - PWSA | USA Blog Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Aardvark Therapeutics Plans to Unblind HERO and OLE Data to Inform Path Forward Following FDA Clinical Hold Free CME! The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life PRETEND Play Intervention Study for Ages 3-7: Eligibility Form For questions, email: neurodevelopmentresearchlab@gmail.com PWS Clinician Information Collection Form PWSA | USA Announcements 2027 United in Hope National PWS Convention Scholarship Applications (Due by June 1, 2026) 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.
#93
May 12 · 49 min
Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues
For this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator, mom to John (living with PWS, and the woman behind Ask Nurse Lynn to talk about behavior and psychiatric issues. We learn some important behavioral tips, the importance of consistency, the signs of when it might be time to intervene with medication, how disordered sleep affects behavior, and more. Our Ask Nurse Lynn library is growing by the week! Please take a moment to look through those articles at Ask Nurse Lynn Archives - Prader-Willi Syndrome Association | USA If you have a non-emergency medical question and would like a response from Lynn, please visit Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com
#92
May 5 · 52 min
Ep91 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
#91
April 28 · 1 hr
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.
#90
April 21 · 49 min
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.
#89
April 14 · 42 min
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
#88
April 7 · 25 min
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.
#87
March 31 · 58 min
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.

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