Explorez tous les épisodes du podcast PWS United
| Titre | Date | Durée | |
|---|---|---|---|
| Ep8 Direct Support Professionals Week Panel Discussion | 17 Sep 2024 | 00:48:40 | |
In this PWS United episode, we’re reflecting on Direct Support Professionals Week, which took place between September 8th and 14th. This special week is dedicated to honoring the incredible individuals who provide essential care and support to those living with developmental disabilities, including PWS. PWSA | USA CEO, Stacy Ward, leads an important discussion on the history and significance of this week, and how direct support professionals continue to make a difference in the PWS community. Joining Stacy are four remarkable experts: Patrice Carroll from Latham Centers, Nicole Tingley from DD Homes, Lynn Garrick from AME Community Services, and Marguerite Rupnow from Prader-Willi Homes. Together, they share how their organizations celebrated the week and continue to highlight the vital role direct support professionals play in enhancing lives every day. Important Links: Residential Provider Directory: https://www.pwsausa.org/residential-directory/ PWSA | USA Website: https://www.pwsausa.org/
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep7 Edition 106: PWSA | USA Pulse | 10 Sep 2024 | 00:41:43 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We're bringing the newest edition of our Pulse newsletter, this time with some conversation and personal insight. Catch up on the latest news in the PWS community by listening to this edition of the PWS United podcast. LINKS Join PWS Connect on Discord TREND Connect Community and Research Initiative (google.com) The Importance of Newborn Screening - Prader-Willi Syndrome Association | USA (pwsausa.org) Share Your Story - Prader-Willi Syndrome Association | USA (pwsausa.org) 2025 United in Hope Conference - Prader-Willi Syndrome Association | USA (pwsausa.org) PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA (pwsausa.org) 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA (pwsausa.org) Arizona Grand Resort & Spa - Reservations - Room Availability Search (synxis.com) Gavin Gill Classic - Prader-Willi Syndrome Association | USA (pwsausa.org) Answers for Audrey - Prader-Willi Syndrome Association | USA (pwsausa.org) 2024 #RAREis Global Advocate Grant (rareiscommunity.com) Creating a Safe Home - Prader-Willi Syndrome Association | USA (pwsausa.org) Friendship and Beyond: Navigating relationships and sexuality in PWS with Patrice Carroll webinar registration Webinar Registration - Zoom Family Support Webinar: Creating an Individualized Health Plan (youtube.com) Grandparents Day 2024 - Prader-Willi Syndrome Association | USA (pwsausa.org) Call for 2025 Conference Abstracts Conference 2025 - IPWSO ECHO Feeding and Swallowing Registration Meeting Registration - Zoom ECHO Psychiatry and PWS Registration Meeting Registration - Zoom ECHO Exercise Physiology Registration Meeting Registration - Zoom VNS4PWS Clinical Trial: What You Need to Know (youtube.com) PWS Clinics - Prader-Willi Syndrome Association | USA (pwsausa.org) Clinical Trials - Prader-Willi Syndrome Association | USA (pwsausa.org)
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep6 What's the Big Deal About Exercise? | 03 Sep 2024 | 00:40:39 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) Exercise is not a dirty word! Kat Lucero, PWSA | USA Board Member and certified Integrative Health and Wellness Coach and Stacy Ward, PWSA | USA's CEO, discuss the healthy and unhealthy ways we use exercise. Kat shares the many benefits exercise has on our physical and mental health, the variety of ways caregivers can fit exercise and movement into their busy lives, how children benefit from their parent's understanding of health and wellness, group exercise, and more. Does exercise look different as we age? Listen to find out. Here is a clarification from Kat on the heart rate formula mentioned in the interview: "The formula to figure out your maximum heart rate for exercise is 220-your age. However, typically if someone is wanting more cardiovascular fitness: 220- age = max HR x 60% & 75% that's when individuals can see cardiovascular benefits from their workouts."
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| PWS BIPOC Affinity Group | 30 Aug 2024 | 00:45:07 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We spoke with PWS parents and advocates, Dini Rao and Gennelle Conway, about the growing PWS BIPOC Affinity Group. We discussed the experiences and challenges of people of color in the medical and PWS world, implicit bias, personal prejudice, and systemic racism, and how people can be allies in their own lives and public spaces. We also mention a variety of valuable and informative resources so please be sure to check out the links below! If you are a person of color or raising a person of color in the PWS community and are interested in joining Dini and Gennelle and the growing BIPOC Affinity community, email bipocpws@gmail.com. Links to Podcasts: Seeing White from Scene On Radio Intelligence Squared episodes on Apple Links to Articles: Understanding and Addressing Racial Disparities in Healthcare Reducing Racial Disparities in Healthcare Implicit Bias and Racial Disparities in Healthcare Oximeters and skin tone article The Indispensability of Race in Medicine Links to Books: Systemic: How Racism is Making Us Ill by Layal Liverpool So You Want to Talk About Race by Ijeoma Oluo
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Edition 104: PWSA | USA Pulse | 30 Aug 2024 | 00:19:44 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) Carrie and Anne, from PWSA | USA's Communication Dept., share the news and resources from PWSA | USA's Pulse newsletter, edition #104. Our Pulse covers upcoming fundraising events and conferences, advocacy highlights and actions, family support resources and offerings, the latest in research, trial opportunities and more. The Pulse newsletter is published digitally every Friday. Future podcast Pulse episodes will air the following Tuesday. Links: Congressional Letter of Support Blog Post Rare Aware Art Share Submission Form Ask Nurse Lynn "BM & GI Concerns" Aging research Webinar Recordings
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Advocating for Change: A Conversation with Dorothea Lantz | 30 Aug 2024 | 00:35:27 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) In this episode of PWS United, we sit down with Dorothea Lantz, Director of Community Engagement at PWSA | USA, for an insightful discussion about recent and upcoming advocacy efforts. Dorothea offers a recap of the May 2024 D.C. Fly-In and discusses the recent steps taken to advance our congressional requests made during the event. Looking ahead, she outlines exciting initiatives and programs for advocacy in 2025. Dorothea also discusses the crucial steps needed to ensure access to DCCR if it receives FDA approval. The episode concludes with heartwarming reflections on the special mission moments that continue to inspire and drive the community's advocacy work. Links: PWSA | USA Advocacy Efforts PWS Military Family Form 2024 D.C. Fly-In Recap Latest Update on DCCR PWSA | USA Advocacy Email: advocacy@pwsausa.org
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Back to School: PWSA | USA Special Edition Pulse | 30 Aug 2024 | 00:10:27 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We want to make sure the PWS community is aware of the multiple resources offered by PWSA | USA to help you and your loved one with PWS have a successful school year. From suggestions to help ease back to school anxiety for both individual and caregiver, tips for IEPs, our School Success Summit and more, this episode, along with the relevant links, supports your family in having a happy, successful, and confident school year. Links: Navigating Peer Relationships Blog Post School Success Summit Webinar Recordings
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| PWS Connect Teaser | 23 Aug 2024 | 00:05:00 | |
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We are thrilled to announce the upcoming launch of PWS United, a brand-new podcast from PWSA | USA, debuting Friday, August 30, 2024! PWS United will be your go-to source for the latest news, research, advocacy, and family support in the Prader-Willi syndrome community. This podcast brings together voices from across the PWS landscape, offering valuable insights and practical advice to empower and support those affected by PWS. Learn more about Prader-Willi Syndrome and PWSA | USA at www.pwsausa.org Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep10 Clinical Trials | 01 Oct 2024 | 00:49:25 | |
As research and treatment options for the PWS community continue to grow, we wanted to take a closer look at clinical trials, what are they, how are they run, what trials are available for PWS families, and how you can get involved. We hear personal perspectives from families and begin the journey of one family's first foray into a particular trial in the PWS community and how they moved past their years of skepticism to finally come to the decision to enroll. This episode, along with our Special Edition Pulse from September 2024, sheds light on the growing world of PWS clinical trials in hopes of helping families make more informed decisions. LINKS How We Got Here - Prader-Willi Syndrome Association | USA (pwsausa.org) The Screening Appointment - Prader-Willi Syndrome Association | USA (pwsausa.org) Clinical Trials - Prader-Willi Syndrome Association | USA (pwsausa.org) Trials Currently Enrolling (as of podcast publication date): TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today (tempopwsstudy.com) Enrolling now VNS4PWS (fpwr.org) Clinical Trials Not Currently Enrolling (as of podcast publication date): Pipeline – Aardvark Therapeutics VOYAGE Study Overview (pwsausa.org) Our Science – Soleno Therapeutics Email your PWS Clinical Trial Experience to:
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Pulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & More | 24 Sep 2024 | 00:42:14 | |
Catch up on the latest news in the PWS community by listening to this edition of the PWS United podcast. LINKS PWSA | USA's Podcast has a New Name! - Prader-Willi Syndrome Association | USA (pwsausa.org) Service Dog at Home and at School - Prader-Willi Syndrome Association | USA (pwsausa.org) Obtaining and Training a Service Dog - Prader-Willi Syndrome Association | USA (pwsausa.org) Getting a Service Dog - Prader-Willi Syndrome Association | USA (pwsausa.org) Home - 2025 United in Hope PWS Conference (cventevents.com) Arizona Grand Resort & Spa - Reservations - Room Availability Search (synxis.com) 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA (pwsausa.org) Home | Celebrate National PWS Awareness Day 2024 (justgiving-sites.com) Narcolepsy in PWS - Prader-Willi Syndrome Association | USA (pwsausa.org) PWS Moms' Hiking Weekend - Prader-Willi Syndrome Association | USA (pwsausa.org) Ask Nurse Lynn: Food Anxiety - Prader-Willi Syndrome Association | USA (pwsausa.org) TREND Webinar Registration - Zoom Conference 2025 - IPWSO (scroll down to see Calls for Abstracts info) Project Echo - Prader-Willi Syndrome Association | USA (pwsausa.org) Residential Provider Directory - Prader-Willi Syndrome Association | USA (pwsausa.org)
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Pulse 108: Prepare for Holidays, New Staff, Operation Holiday Cheer, & More | 08 Oct 2024 | 00:45:10 | |
The latest in PWSA news, research, fundraising, family support, advocacy, and more. Be sure to check out the links! LINKS Our Staff - Prader-Willi Syndrome Association | USA (pwsausa.org) Halloween Fun for Everyone - Prader-Willi Syndrome Association | USA (pwsausa.org) Celebrate Thanksgiving Safely - Prader-Willi Syndrome Association | USA (pwsausa.org) Celebrate Holidays Safely - Prader-Willi Syndrome Association | USA (pwsausa.org) Hope for the Holidays - Prader-Willi Syndrome Association | USA (pwsausa.org) Share Your Story - Prader-Willi Syndrome Association | USA (pwsausa.org) Arizona Grand Resort & Spa - Reservations - Room Availability Search (synxis.com) Home - 2025 United in Hope PWS Conference (cventevents.com) 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA (pwsausa.org) Inaugural RMC Foundation Golf Outing: Jen Garzia Speech (youtube.com) Dance Silly for Prader Willi T-Shirt - Prader-Willi Syndrome Association | USA (pwsausa.org) Events from October 11 – June 24, 2025 – Prader-Willi Syndrome Association | USA (pwsausa.org) New England Prader Willi Conference Tickets, Sat, Nov 2, 2024 at 8:30 AM | Eventbrite The Many Factors of Independence - Prader-Willi Syndrome Association | USA (pwsausa.org) Ask Nurse Lynn: Bowel Movements and Picking - Prader-Willi Syndrome Association | USA (pwsausa.org) TREND Webinar Registration - Zoom Project Echo - Prader-Willi Syndrome Association | USA (pwsausa.org) Prader-Willi Syndrome Association - YouTube
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep12 PWS Parent Clint Hurdle Shares Advice for Dads, Personal Stories | 15 Oct 2024 | 00:41:33 | |
In this episode of PWS United, Clint Hurdle, former MLB manager and proud dad to Madison (22), who is living with Prader-Willi syndrome, sits down with PWSA | USA CEO Stacy Ward for a heartfelt conversation. Clint shares his family’s journey from Madison’s diagnosis to connecting with PWSA | USA, offering fun personal stories and reflections. With nearly 50 years in Major League Baseball and over 1,000 managerial wins with the Colorado Rockies and Pittsburgh Pirates, Clint brings a unique perspective and shares powerful advice for other dads navigating a PWS diagnosis. As PWSA | USA's national spokesperson, Clint’s passion and dedication to the PWS community shine through. Helpful links PWSA | USA Dads Facebook Group (Private): https://www.facebook.com/groups/PWSAUSA.Dads PWSA | USA's Website: https://www.pwsausa.org/
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep13 Pulse109: Physical Therapy Month, Dominique Valenti, FDA Meeting, PWS Book Review | 22 Oct 2024 | 01:10:18 | |
Updates on PWSA events and fundraisers, along with the latest news in advocacy, family support, and research in the PWS community. PWSA | USA's hotline is (941) 312-0400 Links: Therapeutic-interventions-1-1.pdf Move Play Thrive | Brain and Sensory Foundations Course - Home Share Your Story - Prader-Willi Syndrome Association | USA Home - 2025 United in Hope PWS Conference PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA PWS Hope United: Dance Silly for Prader-Willi The Giving Pump 2024, CPD Energy & Prader-Willi Syndrome Association Events from October 24 – June 24, 2025 – Prader-Willi Syndrome Association | USA New England Prader Willi Conference Tickets, Sat, Nov 2, 2024 at 8:30 AM | Eventbrite Halloween Fun for Everyone - Prader-Willi Syndrome Association | USA Home | Reagan-Udall Foundation Success-for-PWS-FDA-Rare-Disease-Innovation-HUB_Oct10_tvs.pdf Forces of Nature, A PWS Book Review - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Aging in PWS - Prader-Willi Syndrome Association | USA Webinar Registration - Zoom TREND Webinar Remote Light Therapy Study: psychresearch@maimo.org Conference 2025 - IPWSO: Abstracts Submissions Project Echo - Prader-Willi Syndrome Association | USA ECHO 4 PWS: Cardiac Concerns webinar recording Hope for the Holidays - Prader-Willi Syndrome Association | USA A Letter to Friends and Family - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep14: Adults with PWS Advisory Board | 29 Oct 2024 | 00:22:41 | |
PWSA | USA's Adults with PWS Advisory Board recently met in person at the site of the 2025 International PWS conference. Stacy Ward, CEO of PWSA, interviewed board members to share more about the work they do, how they began, what it's like living with PWS, advice for families, and what strengths they are looking for as they seek for a new member. Advisory Board members include Conor Heybach, Shawn Cooper, Abbott Philson, Kate Kane, Victor Penta, Trevor Ryan, and Brooke Fuller. Links: Virtual Art Gallery: Rare Aware Art Share Portfolio 2024 - Prader-Willi Syndrome Association | USA Submissions: PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep15 Pulse 110: Angel Drive Kick-Off, NORD Summit, Family Caregiver Month, Clinical Trial Journey | 07 Nov 2024 | 00:46:41 | |
The latest in PWSA events and PWS news in research, family support, and advocacy with PWSA | USA's Director of Development, Melanie McDonald, filling in for Carrie. Hear about the launch of our Angel Drive campaign and how you can donate, the latest happenings on Capitol Hill, support for PWS families affected by the recent hurricanes, PWS in adulthood blog series, upcoming family support webinars, workshops, and offerings and Family Caregiver Month, an update on one family's clinical trial journey, the newest TEMPO clinical trial site, ECHO webinar series, and Melanie's mission moment. LINKS https://www.pwsausa.org/angel-drive-2024/ About PWSA | USA's Hope in Action Series https://www.pwsausa.org/get-involved/share-your-story/ Home - 2025 United in Hope PWS Conference PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Hurricane Relief: info@pwsausa.org, or call us directly at 941-312-0400 Events from November 1 – June 24, 2025 – Prader-Willi Syndrome Association | USA Workplace Assistance - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Emergency Information Folder - Prader-Willi Syndrome Association | USA Self-Care for Caregivers - Prader-Willi Syndrome Association | USA Babysitter and Care Provider Training: Webinar Registration - Zoom Journaling and Story Sharing Workshop: africke@pwsausa.org Baseline and Video Interview - Prader-Willi Syndrome Association | USA TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today Call for Abstracts: Conference 2025 - IPWSO Project Echo - Prader-Willi Syndrome Association | USA Meditation, Mindfulness, and Self-Care - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep16 Self-Care, Self-Advocacy, and Gratitude | 12 Nov 2024 | 00:58:22 | |
PWSA | USA's communication team, Carrie and Anne, speak with PWS mom, Emily Felt, about self-care for caregivers. We talk about what caregiver burnout may look like, various ways to practice meditative activities and why, the importance of self-advocacy and external support, what gratitude does for perspective and mental health, and how and why to keep showing up for yourself. Whether your self-care routine is a walk in the forest, yoga stretches in the morning, a campfire with friends, or all of the above, we hope this conversation helps you better understand the need for self-care as a caregiver, ways to bring more of it into your life, and how to truly show up for yourself. If you have questions and would like to get in touch with Emily, you can reach her through these links: https://substack.com/@emilyfelt https://www.linkedin.com/in/emilyfelt/ Upcoming Resources for Caregivers: Register for the "Babysitter and Respite Worker Training" webinar with Lisa Graziano at Webinar Registration - Zoom Sign up for the "Journaling and Story Sharing workshop" with Anne Fricke by emailing africke@pwsausa.org Space is limited so sign up now.
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep19 Caring for the Caregiver | 03 Dec 2024 | 00:37:15 | |
As parents and caregivers, caring for ourselves is one of the most important—and one of the most often forgotten—things we can do as a caregiver. If we neglect to take care of ourselves, we may likely find that it is more challenging to care for our loved ones. When our needs are taken care of, the person we care for will benefit, too. Recognizing that we need to take of ourselves, and actually doing that, are not always synonymous. In an effort to inspire you all to care for yourselves, we put together a "Caring for the Caregivers" email newsletter and podcast episode. Be sure to check out the links in the show notes! Donate on Giving Tuesday to get matched up to $25,000! Angel Drive 2024 - Prader-Willi Syndrome Association | USA Email to join our communications work group africke@pwsausa.org LINKS: Babysitters and Respite Workers: National Respite Locator Service Care Guide with Resource Documents: Important Info for Babysitter or Respite Worker Care Guide with Downloadable Link: Important Info for Babysitter or Respite Worker Family Support Webinar: Babysitter and Care Provider Training Self-Care “Apps”: Mayim Bialik's Breakdown Podcast - Apple Podcasts Calm - The #1 App for Meditation and Sleep Insight Timer - #1 Free Meditation App for Sleep, Relax & More Hard Fought Hallelujah by Brandon Lake: Bing Videos Peloton: The ultimate fitness experience Amazon Kindle: Your free personal library you can take anywhere Mealime - Meal Planning App for Healthy Eating - Get it for Free Today! Workout for Women: Fit & Sweat - Apps on Google Play Ep16 Self-Care, Self-Advocacy, and Gratitude | PWS United Blogs: Self-Care for Caregivers - Prader-Willi Syndrome Association | USA Simple Tools for Managing Stress - Prader-Willi Syndrome Association | USA Exercise, Movement, and Mental Health - Prader-Willi Syndrome Association | USA Meditation, Mindfulness, and Self-Care - Prader-Willi Syndrome Association | USA Simple Self-Care - Prader-Willi Syndrome Association | USA Journaling as Therapy - Prader-Willi Syndrome Association | USA Adoption Month: An Adoption Story - Prader-Willi Syndrome Association | USA Ep18 National Adoption Month, Adopting a Loved One with PWS | PWS United
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep18 National Adoption Month, Adopting a Loved One with PWS | 26 Nov 2024 | 00:42:42 | |
November is National Adoption Month, and we have a lovely episode with Rachel Aazzerah, the adoptive mom of Michael, a 6-year-old with PWS. She speaks with Stacy about her family’s experience in adopting Michael as a baby, what open adoption looks like, and offers advice and suggestions for how families can look into adoption for themselves. This conversation steers around to how people can support adoption causes - like donating to local foster care closets, being a respite home for infants, and even donating airline miles for things like medical trips. Rachel and Stacy also discuss the challenges of adoption, like the emotional roller coaster and having to invite social workers into your home, how and where to find your people for support, and how Rachel knew Michael was her baby the first time she held him. Please remember to rate and review the podcast and share with your friends. Learn more about Prader-Willi syndrome and how PWSA | USA supports the PWS community at www.pwsausa.org
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study | 19 Nov 2024 | 00:43:45 | |
The latest in PWSA events and PWS news in research, family support, and advocacy. Get a brief introduction to International 15Q Day and how you can help support PWSA | USA for our 2024 Angel Drive fundraiser. Other topics include the 2025 International PWS conference and FPWRs travel scholarship, Rare Aware Art Share birthday theme, our Hope in Action video series, a PWS Christmas party in the Pacific Northwest, PWS conference in Texas, Dorothea Lant's new appointment on RDLA advisory committee, Kristi and Justice Rickenbach's' feature in Soleno video, one family's story of how PWSA | USA helped them through a medical emergency, Ask Nurse Lynn's anesthesia response, upcoming webinar for Babysitter and Care Provider training, journaling and story sharing circle, Trend's new report on PWS and pain, a new site for Harmony TEMPO trial, study to measure hyperphagia, calls for Abstracts, upcoming ECHO 4 PWS webinar on Orthopedics and PWS, and our Holiday Gift Guide - Sensory Edition. Anne also shares what she has learned and appreciates about her first year of working with PWSA | USA. LINKS Donate to our Angel Drive: Angel Drive 2024 - Prader-Willi Syndrome Association | USA International 15q Day - Prader-Willi Syndrome Association | USA Share your Spotlight on Hope: Share Your Story - Prader-Willi Syndrome Association | USA FPWR Travel Awards 2025 - IPWSO 2025 United in Hope Conference - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA PWSA of Washington and Oregon Christmas Party: vsheadel@gmail.comor 360-609-5197 Texas Prader-Willi Association Conference: 713-253-9032 Texas Prader-Willi Association Soleno Therapeutics "Our Stories": A Journey into Adulthood with Prader-Willi Syndrome (PWS) | Kristi & Justice's Experience Ask Nurse Lynn Blog: Ask Nurse Lynn: Anesthesia Concerns and Dental Procedure - Prader-Willi Syndrome Association | USA Submit your question for Nurse Lynn: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Babysitter and Care Provider Training Webinar: Webinar Registration - Zoom Journal and Story Sharing Workshop: africke@pwsausa.org TREND Pulse Report: PWS and Pain - Prader-Willi Syndrome Association | USA Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA Hyperphagia Study: Parent Consent Form Hyperphagia-Study-Flyer.pdf Call for Abstracts: Conference 2025 - IPWSO ECHO 4 PWS Orthopedics and PWS webinar: Meeting Registration - Zoom Project Echo - Prader-Willi Syndrome Association | USA Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep24 TREND & PWS Connect | 14 Jan 2025 | 00:58:55 | |
This episode is an edited recording of a past webinar explaining how parents can help advance PWS research while also finding and building community support. PWS parents Maria Picone and Chris DeFelice shared how their personal journey with PWS led them to create the PWS Connect channel on Discord, a place where caregivers come together to share their journeys, experiences, questions, and advice to support each other and directly impact the progression of PWS research. This episode explains the What, Why, and How of TREND Community and the PWS Connect Discord group. Join PWS Connect on Discord for a new wave of PWS insights and growing research! Join PWS Connect on TREND below. PWSA-Emergency-Preparedness-Checklist.pdf
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community Stories | 07 Jan 2025 | 00:31:14 | |
Listen to the latest in PWSA events and PWS news: how to help us celebrate our 50th Birthday year in 2025 at the Journey of Hope Gala and our 50th birthday party at the International PWS conference in June, a young artist's Spotlight on Hope, call for Rare Aware Art Share submissions, Diamonds and Denim fundraiser, the upcoming PWS Advocacy master class, PWSA Egypt, Nurse Lynn's response for a late diagnosis and newborn screening, the new Journeys project on PWS Connect on Discord, call for abstracts for Clinical and Scientific Program, our Parent/Family Mentor Program, and of course, Carrie and Anne's latest mission moments. Emails: Dorothea Lantz, Community Engagement Director - dlantz@pwsausa.org Jim Sliney at Patients Rising - jsliney@patientsrising.org Events Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Home - 2025 United in Hope PWS Conference Diamonds & Denim 2025 - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Lenny's Business Fair Breakthrough - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWS Advocacy Master Class Sign up | Patient Rising Community Family Support A Global Network of Hope: How PWSA Egypt & Middle East is Transforming Lives - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Late Diagnosis and Newborn Screening - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Call for Abstracts: Conference 2025 - IPWSO Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays | 24 Dec 2024 | 00:34:08 | |
In this Pulse episode, Carrie and Anne discuss the holidays, the upcoming close of Angel Drive, Stacy's message of gratitude and progress, a young marathon runner with PWS, Rare Aware Art deadline, 2025 International conference, Hot Stove save the date, Inclusive Advocacy in Action, James and Elaine Towle's "Our Stories" video, year-end highlights for advocacy, the latest PWS in Adulthood blog, an Ask Nurse Lynn question about Lorazepam, international book award for Destiny Pacha, call for abstracts for Clinical and Scientific program, ECHO webinar library, our blog on traveling with medication, and an expression of our gratitude for the PWS community and those who have listened, reviewed, and supported the PWS United podcast as we continue this initiative. Happy Holidays to all the PWS families and beyond! Emails: Join BIPOC Affinity Group: BIPOCPWS@gmail.com Share PWS in Adulthood Blogs: africke@pwsausa.org LINKS Angel Drive 2024 - Prader-Willi Syndrome Association | USA Hope in Action: A Message of Gratitude and Progress from PWSA | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Home - 2025 United in Hope PWS Conference Spotlight on Hope Klara on the Run - Prader-Willi Syndrome Association | USA Advocacy Empowering Change: Inclusive Advocacy in Action - Prader-Willi Syndrome Association | USA Jim's Adult Journey with Prader-Willi Syndrome Family Support Managing Living Situations - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Tapering Lorazepam - Prader-Willi Syndrome Association | USA Research Call for Abstracts: Conference 2025 - IPWSO PWSA | USA ECHO 4 PWS - YouTube Resource Spotlight How To Travel with Refrigerated Medication - PWSA USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep21 Meet the PWSA | USA Staff | 17 Dec 2024 | 01:55:42 | |
Meet the PWSA | USA staff! In this episode, listeners get a behind-the-scenes glimpse of the dedicated staff as we answer questions about what we do for the organization, what we love about working for PWSA and the PWS community, what we think you all need to know about what we offer, where would Carrie travel to tomorrow, what skills does Anne wish she had, what is one (of many) of Dorothea's most memorable moments on Capitol Hill, and who does Stacy prefer - individuals with PWS or their parents? We hope you enjoy getting to know the staff and the organization as we wrap up 2024 and head into our 50th Anniversary year! LINKS 2025 United in Hope Conference - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep20 Pulse 112: Angel Drive, Georgia Advocacy, Growth Hormone, Clinical Trial Journey | 10 Dec 2024 | 00:36:27 | |
The latest in PWSA | USA events and PWS news. LINKS Donate: Angel Drive 2024 - Prader-Willi Syndrome Association | USA PWSA | USA Hope in Action: Grandparents’ Stories of Love and Resilience Share your Spotlight on Hope: Share Your Story - Prader-Willi Syndrome Association | USA 2025 United in Hope PWS Conference Submit to the Rare Aware Art Share: PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Rare Aware Art Share Gallery: Rare Aware Art Share Portfolio 2024 - Prader-Willi Syndrome Association | USA BIPOC Affinity Group: BIPOCPWS@gmail.com Joining Georgia Advocacy: dlantz@pwsausa.org Conway Family Soleno video: A Family’s Journey Managing Prader-Willi Syndrome Rare-Pediatric-Disease-Priority-Review-Voucher-Program-Reauthorization-Community-Letter-1.pdf The (Sometimes Messy) Details of Life in a Clinical Trial - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: When to Start Growth Hormone - Prader-Willi Syndrome Association | USA Family Support Webinars YouTube Library: 2024 PWSA | USA Family Support Webinars - YouTube Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA Abstracts for Clinical and Scientific Program: Conference 2025 - IPWSO Register for ECHO 4 PWS webinar "Orthopedics and PWS": Meeting Registration - Zoom Project ECHO: Project Echo - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, Sertraline | 21 Jan 2025 | 00:39:00 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search Home - 2025 United in Hope PWS Conference For info on sponsorship opportunities: development@pwsausa.org PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Prader-Willi Hot Stove | Powered By GiveSmart Diamonds & Denim 2025 - Campaign PWSA Fundraising Pages - Campaign Announcements/Resource Spotlight PWSA-Emergency-Preparedness-Checklist.pdf Growth-Hormone-booklet-third-Edition_FINAL.pdf Spotlight on Hope Spotlight on Hope: Overcoming What Feels Impossible - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Changes at FDA’s Center for Drug Evaluation and Research - Prader-Willi Syndrome Association | USA Family Support Ask Nurse Lynn: Determining Appropriate Setraline Dose - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA Research Trial Transitions and Testimonials - Prader-Willi Syndrome Association | USA Call for Abstracts: Conference 2025 - IPWSO
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep26: Clinical Trial Perspectives Part 1 | 28 Jan 2025 | 00:50:17 | |
Justice and Kristi Rickenbach, along with Jennifer Andrews, sat down with Anne Fricke to share their experiences and perspectives on participating in Harmony Biosciences' pitolisant clinical trial. Pitolisant is being tested for its efficacy in treating excessive daytime sleepiness in individuals with PWS. They discuss what brought them to this particular trial, details and logistics, the importance of participating in a clinical trial and research, and life before and after enrolling. PWSA | USA would like to clarify that this clinical trial is one of several available in the PWS community and future episodes will cover some of these. To learn more and find clinical trials that might be a fit for your family, please visit Clinical Trials - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep27: Advocacy with Terry Wilcox from Patients Rising | 04 Feb 2025 | 00:46:55 | |
Terry Wilcox is the co-founder and CMO of Patients Rising, the "leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare access challenges." Terry sat down with our Director of Community Engagement, Dorothea Lantz, to talk about patient advocacy on state and federal levels, the importance of rare disease groups advocating together, and tips to keep in mind when advocating with representatives. Links: Patient Advocacy Platform | Patient Empowerment | Patients Rising How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits - The New York Times How a Company Makes Millions Off a Hospital Program Meant to Help the Poor - The New York Times
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job Announcement | 11 Feb 2025 | 00:38:33 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search Home - 2025 United in Hope PWS Conference For info on sponsorship opportunities: development@pwsausa.org Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Prader-Willi Hot Stove | Powered By GiveSmart Donate to Diamonds & Denim 2025 PWSA Fundraising Pages - Campaign Rare Disease Day 2025 – Join Us! Spotlight on Hope Spotlight on Hope: Cam, PWS Warrior - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA PWS United Advocacy Victory for the PWS Community in Illinois - Prader-Willi Syndrome Association | USA Illinois General Assembly - Bill Status for SB1651 Illinois General Assembly - Bill Status for HB2541 Find your State Legislator: p2a.co/O6Zyn8Q Family Support Steps Toward More Independent Living - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA Research TREND Report on PWS and Emotional and Behavioral Patterns: 2025_1_31_FINAL_PWS_Report_3.pdf Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight PWSA | USA Employment - Prader-Willi Syndrome Association | USA Stacy Ward email for resume: sward@pwsausa.org Resources A-Z: Behavior - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide | 25 Mar 2025 | 00:38:43 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Awareness Topics Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA 2025 DD Awareness Month: We’re Here All Year! – NACDD Women in PWS: Moving Forward Together - Prader-Willi Syndrome Association | USA What is neurodiversity? - Harvard Health Neurodiversity and Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA United in Hope Conference High-Level 2025 Conference Schedule Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign PWSA Memory: Vanja Holm's contribution to our knowledge of PWS - IPWSO Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome Fundraisers Zahra's Night of Light - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Soleno Sibling/Family Member Stories: stories@soleno.life Soleno Caregiver Photo & Story Release Form (for minor siblings) Feb 2025.docx Soleno Adult Sibling Photo & Story Release Form Feb 2025.docx Family Support Staying Cool at Conference - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Respiratory Infections - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA Research Tirzepatide Study: EndocrineResearch@seattlechildrens.org or 206-987-2540 PWSA | USA Webinar: About Harmony Biosciences TEMPO PWS Clinical Announcements/Resource Spotlight
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep33: Special Education and the Department of Ed. | 18 Mar 2025 | 00:42:58 | |
PWSA | USA’s CEO Stacy Ward sat down with educator and IEP coach, Jamilah Bashir to discuss special education and the state of the Department of Education. They discussed training for special education teachers, the voucher program, where to find good information about changing policies and decisions within the Department of Education, and the path of an executive order. Jamilah clarified the different roles of the U.S. Dept. of Ed. versus the state’s Dept. of Ed., focusing on funding and the accountability of states to provide services. This discussion can provide clear insight on the role of the U.S. Department of Education, why it may be critical for our loved ones with PWS, what the alternative (ie voucher programs and private schools) may look like, and how and why to contact your representatives on this issue. Jamilah Bashir has over 20 years’ experience serving as a special education teacher, special education supervisor, and education consultant across charter, public, and private schools. She has two master’s degrees—one in Education and another in Educational Leadership—from St. Joseph’s University. She is the founder of The IEP Coach LLC, a company dedicated to empowering special education teachers, schools, and parents. Jamilah is a speaker and thought leader and has presented at conferences such as the 2024 Autism in Black Conference and spoken on podcasts like The Impact of Educational Leadership with Isaiah Drone and The Opportunity Gap by Understood.org. She is also the author of Because of H.E.R., a memoir about her experience of growing up with a sibling with a disability. She created resources and programs like the Master the IEP Course and SPEDucators Rise. Jamilah connects with over 7,000 people weekly through her live series The Coaching Corner with the IEP Coach on social media. We want to extend a huge thank you to Jamilah for sharing her knowledge of the special education system and we hope this helps families better understand the current landscape of the Department of Education. LINKS Website: www.theiepcoachllc.com Master the IEP Course: www.mastertheiep.com SPEDucators Rise Coaching Program: https://www.theiepcoachllc.com/speducators-rise-program Freebies: https://www.theiepcoachllc.com/freebies Instagram: Jamilah F. Bashir (@theiepcoachllc) • Instagram photos and videos
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications | 11 Mar 2025 | 00:45:39 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events United in Hope Conference Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Other Events BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome Fundraisers Prader-Willi Hot Stove | Powered By GiveSmart Zahra's Night of Light - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Call to Action for Illinois Families: Witness Slip Illinois General Assembly - Full Text of HR0173 Family Support Her Own Home with Family Nearby - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Interventions for Rectal Picking - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA I Am Full – Stories for Jacob Book Club Discussion: dan_yashinsky@hotmail.com Research TREND Report: Gastrointestinal Issues in the PWS Community - Prader-Willi Syndrome Association | USA Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Call for Nominations or Board of Directors Community Publications - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch | 04 Mar 2025 | 01:32:11 | |
On today's episode, we’re diving into the power of peer-to-peer fundraising through PWS Hope United—PWSA | USA’s platform that lets community members create fundraisers that fit their passion and comfort level. From simple online fundraisers to large-scale in-person events, PWS Hope United provides opportunities for anyone to raise critical funds that support our family services, advocacy efforts, and groundbreaking research for PWS. This episode features interviews with members of PWSA | USA's Development Team to talk about how you can get involved in PWS Hope United. We're also joined by board member and PWS mom Kat Lucero, who has had success with online fundraising and is excited to help launch a brand-new in person fundraising campaign for PWS Awareness Month - "United We Brunch." And finally, Michele Hampton, a dedicated PWS mom shares her experience hosting the Dance Silly for Prader-Willi event. Whether you’re looking for inspiration to start your own fundraiser or just want to hear some incredible stories of community support, this episode is for you. Episode Links: PWS Hope United Website: https://give.pwsausa.org/campaign/pwsa-fundraising-pages/c642678 United We Brunch Website: https://give.pwsausa.org/campaign/united-we-brunch/c664218 United We Brunch Toolkit: https://www.pwsausa.org/wp-content/uploads/2025/03/UNITED-WE-BRUNCH-TOOLKIT.pdf Zahra's Night of Light Website: https://give.pwsausa.org/event/zahras-night-of-light/e640509 PWSA | USA's Events Page: https://www.pwsausa.org/events/ Dance Silly for Prader-Willi Event Page: https://www.pwsausa.org/events/dance-silly-for-prader-willi/
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action | 25 Feb 2025 | 00:38:22 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Events Rare Disease Day Rare Disease Day Hub: PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Live Stream: Rare Disease Week - Attendee Corner Virtual Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Day 2025 – Join Us! Rare Disease Week Advocacy Calls to Action: Join Rare Disease Week Advocacy from Home - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary Journey of Hope Gala: Donate to Diamonds & Denim 2025 Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome Fundraisers Prader-Willi Hot Stove | Powered By GiveSmart PWSA Fundraising Pages - Campaign Spotlight on Hope New Mexico teen receives national acclaim for Girl Scout Gold Award project - KOB.com Share Your Story - Prader-Willi Syndrome Association | USA Call to Action! Call to Action: Save Our Clinical Trials - Prader-Willi Syndrome Association | USA Advocacy Aardvark Therapeutics Rings the Closing Bell | Nasdaq Family Support Celebrating National Caregivers Day 2025 - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA Research Twins & Prader-Willi Syndrome Survey Announcements/Resource Spotlight Call for Nominations or Board of Directors Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board | 18 Feb 2025 | 00:53:55 | |
Introducing Pioneers in PWS, a new podcast series from PWS United in honor of PWSA | USA's 50th Anniversary! Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community—one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA’s 50th anniversary, we’re diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to explore where we’ve been, how far we’ve come, and recognize the pioneers who made it possible. With National Caregivers Day falling on February 21st, we’re kicking off the series with a look back at the formation and impact of the Professional Providers Advisory Board. Since 2008, this group has been instrumental in shaping best practices for residential care providers supporting individuals with Prader-Willi syndrome. Join us as we revisit the history and evolution of this essential advisory board with two special guests: Jeff Covington, a founding member of the board and former co-chair (2012-2014), and Stacy Ward, CEO of PWSA | USA. Together, they’ll share their insights on the challenges, milestones, and lasting impact of the board’s work in improving residential care and training for professional providers worldwide. Episode links: Original Pioneers in PWS blog article - https://www.pwsausa.org/pioneers-devoted-to-educating-and-supporting-residential-care-and-education-professionals/ Technology Supports: https://www.pwsausa.org/resources-a-z/technology-supports/ Best Practice Guidelines for Standard of Care in PWS: https://ipwso.org/wp-content/uploads/2020/10/PWS-Best_Practice_Guidelines.pdf 2025 International PWS Conference (Register to attend this year's Professional Providers Conference): https://pwsausaevents.cventevents.com/event/04353c7a-d6b1-45f9-9d6f-48acda9cd07e/home PWSA | USA's 2024 Residential Providers Conference Recap: https://www.pwsausa.org/residentialprovidersconference/
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep35: PWS and Sibling Support | 01 Apr 2025 | 00:45:16 | |
On the podcast today is our beloved Parent Support Coordinator Kristi Rickenbach, along with Board members Denise Servais and Lisa Lamb, and Marketing and Communications Coordinator, Anne Fricke. They are all parents of multiple children, including a child with Prader-Willi syndrome. In their conversation, they discussed feelings of getting it wrong - of over-managing social situations and lives, letting siblings take on perhaps too much responsibility, over-compensating for the challenges of PWS and time spent with the child with PWS, and other feelings of inadequacies. They discuss the importance of quality time, making sure the sibling is heard, how to validate their feelings, and be vulnerable, fairness and the difference between equality and equity, and why PWS parents should be talking honestly with their children. We want you all to know that you are not alone, that feeling inadequate or that you’re not getting it quite right, is absolutely normal and these moms can relate. We also want to know how we, as an organization and as parents, can better support siblings in our community. Please feel free to email Anne at africke@pwsausa.org and let us know the kind of support you need or share with us your tips for supporting your sibling. Join our bi-weekly Pulse email newsletter at Join our Newsletter - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling Guide | 08 Apr 2025 | 00:32:51 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. Please remember to leave a rating and a review.
PWSA | USA’s Annual Report: Online Flipbook United in Hope Conference Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary PWSA Memory: Pioneering geneticist Merlin G. Butler, M.D., Ph.D., keeps pushing the boundaries of science Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events VYKAT XR (formerly DCCR) informational webinar Home | VYKAT XR (diazoxide choline) extended-release tablets Prader-Willi Alliance of New York Inc. - Events Fundraisers PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWS Awareness Month Proclamation Toolkit Family Support What It's Like to Have a Sibling with PWS - Prader-Willi Syndrome Association | USA Send your sibling blog to africke@pwsausa.org A Loving School is Vital - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Food-Seeking Behaviors - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1s | 15 Apr 2025 | 00:29:38 | |
On this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator and the woman behind Ask Nurse Lynn. We pulled three previous submissions to discuss on this episode, based on some common questions that families in the PWS community have. Nurse Lynn discussed when and why to start growth hormone, tips for helping your loved one with skin-picking issues, and what are GLP-1s and why they may or may not work on individuals with PWS. 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 Research Study of the GLP-1 Tirzepatide: Looking for participants with PWS aged 18-26. To take part in this research study or for more information, contact the Endocrine Research Team at EndocrineResearch@seattlechildrens.org or 206-987-2540 Download our Medical Alert Book: MedicalAlertsBooklet-GIChart-2022.pdf Download our third edition Growth Hormone booklet: Growth-Hormone-booklet-third-Edition_FINAL.pdf
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security Webinar | 22 Apr 2025 | 00:45:02 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. VYKAT XR Town Hall: Meeting Registration - Zoom United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary PWSA Memory: 1976_Vol-II-N1-Jan-1976.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Financial Security Webinar: Webinar Registration - Zoom VYKAT XR Town Hall: Meeting Registration - Zoom NC Hope United 5K & Family Fun Run - Campaign Zahra's Night of Light Shines Bright! - Prader-Willi Syndrome Association | USA Fundraisers PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWS Awareness Month Proclamation Toolkit Family Support Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Hygiene Concerns and Solutions - Prader-Willi Syndrome Association | USA Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question PWS Awareness Month - Prader-Willi Syndrome Association | USA Research Health Care Professionals Webinar: Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Find Your Voice: Advocating for PWS Health Care Webinar Series - YouTube
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics | 29 Apr 2025 | 00:22:44 | |
In this episode of PWS United, we explore the science and hope behind Aardvark Therapeutics’ ARD-101, an investigational treatment currently in its Phase 3 clinical trial for Prader-Willi syndrome. Our guests, Dr. Tien Lee, CEO of Aardvark Therapeutics, and Dr. Manasi Jaiman, Chief Medical Officer, break down the difference between hunger and appetite, and how ARD-101 targets gut-brain signaling to reduce hyperphagia. Dr. Lee and Dr. Jaiman also share insights into Aardvark’s uniquely compassionate approach to clinical trials, including their close engagement with the PWS community. Tune in to learn how this innovative therapy could impact the future of care for individuals living with PWS. We’re proud to recognize Aardvark Therapeutics as our Diamond Sponsor for the 2025 International PWS Conference – United in Hope, happening this June in Phoenix, Arizona. Visit their exhibitor table and meet many members of their team in person! Important Links:
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary | 06 May 2025 | 00:41:15 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: PWSA-Pulse-May-2021.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Financial Security Webinar: Webinar Registration - Zoom Fundraisers PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Members Sought for the Drug Utilization Review Board PWS Awareness Month Proclamation Toolkit Family Support Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight A Letter to Friends and Family - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep41: PWS Origin Stories, Success, and Awareness | 13 May 2025 | 00:47:10 | |
PWSA | USA staff members Sarah Kasaby, Melanie Zalman, Charles Conway, Elaine Towle, and Kristi Rickenbach, are parents of loved ones with PWS. On this episode of PWS United, they share their PWS origin stories, how things have changed since the early days of their PWS journey, and their favorite ways to spread PWS awareness. Honesty, wisdom, support, pride in their loved ones, and hope for the future permeate this episode - an inspiring way to celebrate PWS Awareness Month for all of May, focusing on May 15 as PWS Awareness Day! Find ways you can help spread awareness at our PWS Awareness Month - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep43: All Things Conference | 27 May 2025 | 00:37:34 | |
PWS United hosts Carrie Ilijevich and Anne Fricke sat down with Kristi Rickenbach, PWSA | USA Parent Support Coordinator and frequent guest on the podcast, and the woman behind so much of the intricate and incredible planning, PWSA | USA’s Events Coordinator, Angela Frazier, for a conversation about all things conference. They covered many topics including the mobile app for conference, getting around the grounds and the venue, food availability and meal planning, staying cool in the Arizona heat, PWSA | USA's 50th birthday celebration, and more. Home - 2025 United in Hope PWS Conference 2025 Pre-Conference Feedback Survey
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner | 20 May 2025 | 00:27:23 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference Clinical and Scientific Program High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Prader Silly: A Night of Rare Laughs - Campaign Fundraisers Lyra Mills's fundraising page for Prader-Willi Syndrome Association Filling Cups with PWS Awareness - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Lydia and Dalyas Dreamers - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWSA Advocates Represent Disability Needs and Rights in DC - Prader-Willi Syndrome Association | USA PWS Awareness Month Proclamation Toolkit Family Support Adults with PWS Advisory Board Spotlight: Conor Heybach - Prader-Willi Syndrome Association | USA PWSA | USA Family Support Webinar: Creating Financial Security for a Loved One with PWS Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Ask Nurse Lynn: Genetics and Weight Gain - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Aardvark’s HERO Clinical Trial Webinar: Webinar Registration - Zoom Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep 47: Nutrition Recommendations for PWS: Conference Session | 01 Jul 2025 | 00:56:31 | |
This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role. Nutrition Slides from Michael Tan's session: https://www.pwsausa.org/wp-content/uploads/2025/07/PDF-Nutrition-Slides.pdf To share your conference testimonial on the PWS United podcast, please email africke@pwsausua.org
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep46: Pioneers in PWS Series - The Parent Mentoring Program | 17 Jun 2025 | 00:28:26 | |
This is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating PWSA | USA's 50th Anniversary! Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community-one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA's 50th anniversary, we're diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to explore where we've been, how far we've come, and recognize the pioneers who made it possible. In this episode, we look back at the foundation of our parent mentoring program, how it has evolved over the years, and the incredible women who have passed the torch of support. We hear a brief testimonial from two current parent mentors about some of their favorite experiences of being a mentor. This episode closes out with an interview with the current director of the parent mentoring program, Kristi Rickenbach. She shares with us how she got involved, what she loves about this work, and ultimately, what her goal is as a parent mentor. You can read the original Pioneers in PWS article at Pioneers in PWS - The Parent Mentoring Program - Prader-Willi Syndrome Association | USA As a reminder, that there will be no new episode coming out next Tuesday. We will be at the International PWS Conference in Phoenix, AZ. Our next episode of PWS United will be a LIVESTREAM from a conference session on Saturday, June 28. Learn more about the session and how to join the livestream at How To Join a PWS United Livestream on Podbean - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, Livestream | 10 Jun 2025 | 00:32:10 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Scoliosis Awareness - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference How-to-Download-the-2025-United-in-Hope-PWS-Conference-Mobile-App.pdf 2025 United in Hope Welcome Packet 2025ClinicalScientific-Agenda.pdf 2025ProfessionalProviders-Agenda.pdf 2025Adults-with-PWS-Agenda.pdf 50th Anniversary PWSA Memory: 1990_Vol-XVI-N1-Jan-Feb-1990.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Prader Silly: A Night of Rare Laughs - Campaign Fundraisers Hunter Lens Golf Tournament - Campaign Hummus, Tahini, and PWS Awareness - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Ada Thrives and Shines - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Family Support Adults with PWS Advisory Board Spotlight: Abbott Philson - Prader-Willi Syndrome Association | USA Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Recruitment – SibTime II -English - Influents Innovations Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Get to Know Aardvark Therapeutics Phase 3 HERO PWS Study Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Voice of the Patient Report: VOP-Report-4.30_.pdf PWS Externally-Led Patient-Focused Drug Development Meeting
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep 44: PWSA, IPWSO, FPWR: United in Hope | 03 Jun 2025 | 00:23:24 | |
On June 24-28 families and providers in the PWS community from around the world will be gathering in Phoenix, AZ for the 2025 United in Hope International PWS Conference. This is the first ever joint conference between PWSA | USA, FPWR and IPWSO, which symbolizes a historic milestone in the PWS community This groundbreaking event will shape the future of PWS research and care. In this episode, we have a conversation between the three organization heads, Susan Hedstrom, Marguerite Hughes, and of course, our own Stacy Ward. They spoke about what this conference collaboration means for the PWS community and the families we support, and how conference is a place to find community, explore the experience of rarity, and share commonality amongst people with who you may have thought were worlds apart. With a combined 100 years of dedication and work in the PWS community, this conference collaboration is a momentous event for the PWS community. Susan Hedstrom has been the Executive Director of the Foundation for Prader-Willi Research (FPWR) since 2013. Her commitment to this role was deeply rooted in a personal journey that began when her eldest son was diagnosed with Prader-Willi syndrome. Faced with the challenges posed by this rare condition, Susan made a conscious decision not to accept Prader-Willi syndrome as it had been traditionally defined. Instead, she chose to collaborate with a remarkable team of proactive and tireless individuals within FPWR to find treatments and ultimately a cure for Prader-Willi syndrome. Marguerite Hughes was IPWSO’s CEO between 2019 and 2025, prior to which she served as Vice President (2016 to 2019) and Secretary (2013-2016). She has recently stepped aside however; she has kindly agreed to continue as a volunteer in an advisory capacity. Marguerite is the parent of a 20-year-old son who has PWS. She is based in Ireland. Stacy Ward, CEO of PWSA | USA, is a longtime leader in the PWS community with a background rich in non-profit, behavioral health, education advocacy and has held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director of Family Support. Thank you to the three of them for briefly stepping aside from a busy conference planning schedule to talk about this incredible upcoming event. Learn more about this upcoming conference at Home - 2025 United in Hope PWS Conference
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement Letter | 08 Jul 2025 | 00:48:30 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 United in Hope Conference United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference 2025 United in Hope International PWS Conference - YouTube PWSA | USA 50th Birthday Party Drone Show Submit conference testimonials to africke@pwsausa.org or communications@pwsausa.org 50th Anniversary PWSA Memory: 1975-_-Vol-I-N1-July-1975.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Fundraisers Hunter Lens Golf Tournament - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Podcast Advocacy Family Support Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA C15 Foundation – Where Unlimited Potential Can Grow and Thrive Pacific Northwest Map: PWSA Link: Your Guide for Prader-Willi Syndrome Support Ask Nurse Lynn: Aging in PWS and Life Spans - 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 Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight To-Law-Enforcement-Personnel-Regarding-Adults-with-PWS.pdf
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||
| Ep 49: Endocrine in Teens and Adults: Conference Session | 15 Jul 2025 | 00:56:31 | |
This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of growth hormone therapy in those who have completed their growth, including risks and possible benefits and the indications for ongoing sex steroid therapy in adults with PWS. In this discussion you can learn more about growth hormone monitoring and deficiency, delayed or absent puberty, adrenarche vs puberty, and more. Visit our website at www.pwsausa.org
Intro Music: https://www.bensound.com/; License certificate #2242442
| |||
| Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf Gimmes | 22 Jul 2025 | 00:27:11 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 50th Anniversary PWSA Memory: Volume33-Number4.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign 2025 United in Hope International PWS Conference Recap-General 2025 United in Hope International PWS Conference Video Fundraisers No Gimmes for Jimmy - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Volunteer Spotlight: Pillar of Strength, Support, and Hope - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Family Support Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Ocular Issues and Eye Patching - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Study Invitation email: harri764@mailbox.sc.edu Peer-to-Peer Challenge: Interactive Case Studies in Prader–Willi Syndrome Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Prader-Willi Syndrome Glossary - PWSA | USA
Intro Music: https://www.bensound.com/; License certificate #2242442 | |||