PWS United

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. 

Learn more about Prader-Willi syndrome and how PWSA | USA supports the PWS community at www.pwsausa.org 

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: 713-253-9032

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: [email protected]

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

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

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

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 [email protected] Space is limited so sign up now. 

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: [email protected]​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: [email protected]

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

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

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: [email protected]

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

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. 

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

[email protected]

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:

[email protected]

[email protected]

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)