PWS United

Ep20 Pulse 112: Angel Drive, Georgia Advocacy, Growth Hormone, Clinical Trial Journey

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
Make an Impact - PWSA USA

Ep19 Caring for the Caregiver

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

Ep18 National Adoption Month, Adopting a Loved One with PWS

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 
 

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