PWS United

Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study

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
Hope in Action - YouTube
PWSA of Washington and Oregon Christmas Party: vsheadel@gmail.​comor 360-609-5197
Texas Prader-Willi Association Conference: 713-253-9032Texas Prader-Willi Association
Soleno Therapeutics "Our Stories": A Journey into Adulthood with Prader-Willi Syndrome (PWS) | Kristi & Justice's Experience
PWSA | USA Hope in Action: A Lifeline for Families in Crisis - Prader-Willi Syndrome Association | USA
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
TREND Webinar PWSA
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 FormHyperphagia-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
 
 

Ep16 Self-Care, Self-Advocacy, and Gratitude

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/@emilyfelthttps://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. 

Ep15 Pulse 110: Angel Drive Kick-Off, NORD Summit, Family Caregiver Month, Clinical Trial Journey

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.or​g, or call us directly at 941-312-0400
Events from November 1 – June 24, 2025 – Prader-Willi Syndrome Association | USA
PWSA | USA Advocates for PWS on Capitol Hill and NORD Breakthrough Summit - Prader-Willi Syndrome Association | USA
Workplace Assistance - Prader-Willi Syndrome Association | USA
Spreading Joy: Operation Holiday Cheer Returns to Support PWS Families in 2024 - 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
TREND Webinar PWSA
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
 
 
 

Ep14: Adults with PWS Advisory Board

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 
Adults with PWS Advisory Board Gathers in Phoenix: Shaping the Future of Support, Advocacy for Individuals Living with PWS - Prader-Willi Syndrome Association | USA

Ep13 Pulse109: Physical Therapy Month, Dominique Valenti, FDA Meeting, PWS Book Review

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
https://support4pws.com/
FDA Priority Review of DCCR for PWS: Latest Update and What It Means - Prader-Willi Syndrome Association | USA
Home | Reagan-Udall Foundation
Success-for-PWS-FDA-Rare-Disease-Innovation-HUB_Oct10_tvs.pdf
Adults with PWS Advisory Board Gathers in Phoenix: Shaping the Future of Support, Advocacy for Individuals Living with PWS - Prader-Willi Syndrome Association | USA
Forces of Nature, A PWS Book Review - Prader-Willi Syndrome Association | USA
Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA
Spreading Joy: Operation Holiday Cheer Returns to Support PWS Families in 2024 - 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
 
 

Ep12 PWS Parent Clint Hurdle Shares Advice for Dads, Personal Stories

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 linksPWSA | USA Dads Facebook Group (Private): https://www.facebook.com/groups/PWSAUSA.Dads PWSA | USA's Website: https://www.pwsausa.org/ 

Pulse 108: Prepare for Holidays, New Staff, Operation Holiday Cheer, & More

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)
Share Your Halloween Tips and Tricks for PWSA | USA's PWS United Podcast - 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)
Spreading Joy: Operation Holiday Cheer Returns to Support PWS Families in 2024 - 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
Update on Phase 3 COMPASS PWS Study from Acadia - Prader-Willi Syndrome Association | USA (pwsausa.org)
Project Echo - Prader-Willi Syndrome Association | USA (pwsausa.org)
Prader-Willi Syndrome Association - YouTube
africke@pwsausa.org

Ep10 Clinical Trials

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)
A Parent's Perspective on their Child's Clinical Trial - 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)
Home - COMPASS PWS STUDY
Cannabidivarin (CBDV) vs. Placebo in Children With Autism Spectrum Disorder (ASD) | Montefiore Einstein Clinical Trials
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:
africke@pwsausa.org
communications@pwsausa.org
 
 

Pulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & More

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)
Golf | The RMC Foundation
Home | Celebrate National PWS Awareness Day 2024 (justgiving-sites.com)
PWS Advocates in Minnesota Meet with Rep. Angie Craig: A Meaningful Step in Advocacy - Prader-Willi Syndrome Association | USA (pwsausa.org)
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
Family Support Webinar: Friendships and Beyond - Navigating Relationships and Sexuality in PWS (youtube.com)
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)
Share Your Halloween Tips and Tricks for PWSA | USA's PWS United Podcast - Prader-Willi Syndrome Association | USA (pwsausa.org)

Ep8 Direct Support Professionals Week Panel Discussion

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/