PWS United

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/

Ep7 Edition 106: PWSA | USA Pulse

(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)
Empowering Heroes: Residential Providers Conference - Prader-Willi Syndrome Association | USA (pwsausa.org)
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)
FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS - Prader-Willi Syndrome Association | USA (pwsausa.org)
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)
Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA (pwsausa.org)
PWS Clinics - Prader-Willi Syndrome Association | USA (pwsausa.org)
Clinical Trials - Prader-Willi Syndrome Association | USA (pwsausa.org)
africke@pwsausa.org

Ep6 What's the Big Deal About Exercise?

(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."

PWS BIPOC Affinity Group

(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
 

Edition 104: PWSA | USA Pulse

(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:
Planned Giving Webpage
"Less Than No One" Spotlight
United in Hope Conference
United in Hope Mural
RMC Inaugural Fundraiser
Congressional Letter of Support Blog Post
Military Family Form
Rare Aware Art Share Submission Form
Interdependence Blog Post
Ask Nurse Lynn "BM & GI Concerns" 
Aging research Webinar Recordings
Call for Abstracts
Project ECHO 
Acadia Webinar Recording
TREND Launch Report
Harmony TEMPO Trial Sites
Gastroparesis Article
 

Advocating for Change: A Conversation with Dorothea Lantz

(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 EffortsPWS Military Family Form2024 D.C. Fly-In Recap Latest Update on DCCR  PWSA | USA Advocacy Email: advocacy@pwsausa.org

Back to School: PWSA | USA Special Edition Pulse

(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:
School Success Tool Kit
Donate to PWSA | USA
Join our Pulse Newsletter
Navigating Peer Relationships Blog Post
Anxiety and School Blog Post
School Success Summit Webinar Recordings