PWS United – Details, episodes & analysis

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/

(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

(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."

(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

(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

(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

(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

(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

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

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)