Terry Wilcox is the co-founder and CMO of Patients Rising, the "leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare access challenges." Terry sat down with our Director of Community Engagement, Dorothea Lantz, to talk about patient advocacy on state and federal levels, the importance of rare disease groups advocating together, and tips to keep in mind when advocating with representatives. 

Links:

Patient Advocacy Platform | Patient Empowerment | Patients Rising

How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits - The New York Times

How a Company Makes Millions Off a Hospital Program Meant to Help the Poor - The New York Times

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Justice and Kristi Rickenbach, along with Jennifer Andrews, sat down with Anne Fricke to share their experiences and perspectives on participating in Harmony Biosciences' pitolisant clinical trial. Pitolisant is being tested for its efficacy in treating excessive daytime sleepiness in individuals with PWS. They discuss what brought them to this particular trial, details and logistics, the importance of participating in a clinical trial and research, and life before and after enrolling. PWSA | USA would like to clarify that this clinical trial is one of several available in the PWS community and future episodes will cover some of these. To learn more and find clinical trials that might be a fit for your family, please visit Clinical Trials - Prader-Willi Syndrome Association | USA

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The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

Events

Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search

Home - 2025 United in Hope PWS Conference

For info on sponsorship opportunities: [email protected]

PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA

Prader-Willi Hot Stove | Powered By GiveSmart

Diamonds & Denim 2025 - Campaign

PWSA Fundraising Pages - Campaign

Announcements/Resource Spotlight

PWSA-Emergency-Preparedness-Checklist.pdf

Growth-Hormone-booklet-third-Edition_FINAL.pdf

Spotlight on Hope

Spotlight on Hope: Overcoming What Feels Impossible - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Changes at FDA’s Center for Drug Evaluation and Research - Prader-Willi Syndrome Association | USA

Family Support

Volunteer Spotlight | Leadership and Vision: More Than 20 Years of Service - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Determining Appropriate Setraline Dose - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA

Research

Trial Transitions and Testimonials - Prader-Willi Syndrome Association | USA

Call for Abstracts: Conference 2025 - IPWSO

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This episode is an edited recording of a past webinar explaining how parents can help advance PWS research while also finding and building community support. PWS parents Maria Picone and Chris DeFelice shared how their personal journey with PWS led them to create the PWS Connect channel on Discord, a place where caregivers come together to share their journeys, experiences, questions, and advice to support each other and directly impact the progression of PWS research. This episode explains the What, Why, and How of TREND Community and the PWS Connect Discord group. Join PWS Connect on Discord for a new wave of PWS insights and growing research! Join PWS Connect on TREND below. 

TREND Connect

PWSA-Emergency-Preparedness-Checklist.pdf

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Listen to the latest in PWSA events and PWS news: how to help us celebrate our 50th Birthday year in 2025 at the Journey of Hope Gala and our 50th birthday party at the International PWS conference in June, a young artist's Spotlight on Hope, call for Rare Aware Art Share submissions, Diamonds and Denim fundraiser, the upcoming PWS Advocacy master class, PWSA Egypt, Nurse Lynn's response for a late diagnosis and newborn screening, the new Journeys project on PWS Connect on Discord, call for abstracts for Clinical and Scientific Program, our Parent/Family Mentor Program, and of course, Carrie and Anne's latest mission moments. 

Emails:

Dorothea Lantz, Community Engagement Director - [email protected]

Jim Sliney at Patients Rising - jsliney@patient​srising.org

[email protected]

In this Pulse episode, Carrie and Anne discuss the holidays, the upcoming close of Angel Drive, Stacy's message of gratitude and progress, a young marathon runner with PWS, Rare Aware Art deadline, 2025 International conference, Hot Stove save the date, Inclusive Advocacy in Action, James and Elaine Towle's "Our Stories" video, year-end highlights for advocacy, the latest PWS in Adulthood blog, an Ask Nurse Lynn question about Lorazepam, international book award for Destiny Pacha, call for abstracts for Clinical and Scientific program, ECHO webinar library, our blog on traveling with medication, and an expression of our gratitude for the PWS community and those who have listened, reviewed, and supported the PWS United podcast as we continue this initiative. Happy Holidays to all the PWS families and beyond!

Emails:

Join BIPOC Affinity Group: [email protected]

Share PWS in Adulthood Blogs: [email protected]

LINKS

Angel Drive 2024 - Prader-Willi Syndrome Association | USA

Hope in Action: A Message of Gratitude and Progress from PWSA | USA

PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA

Home - 2025 United in Hope PWS Conference

Spotlight on Hope

Klara on the Run - Prader-Willi Syndrome Association | USA

Advocacy

Empowering Change: Inclusive Advocacy in Action - Prader-Willi Syndrome Association | USA

Jim's Adult Journey with Prader-Willi Syndrome

Advocating for Rare Diseases: Year-End Highlights and Uncertain Next Steps - Prader-Willi Syndrome Association | USA

Family Support

Managing Living Situations - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Tapering Lorazepam - 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

Research

FDA Extends Review Period for DCCR: What It Means for the PWS Community - Prader-Willi Syndrome Association | USA

Call for Abstracts: Conference 2025 - IPWSO

PWSA | USA ECHO 4 PWS - YouTube

Resource Spotlight

How To Travel with Refrigerated Medication - PWSA USA

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Meet the PWSA | USA staff! In this episode, listeners get a behind-the-scenes glimpse of the dedicated staff as we answer questions about what we do for the organization, what we love about working for PWSA and the PWS community, what we think you all need to know about what we offer, where would Carrie travel to tomorrow, what skills does Anne wish she had, what is one (of many) of Dorothea's most memorable moments on Capitol Hill, and who does Stacy prefer - individuals with PWS or their parents? We hope you enjoy getting to know the staff and the organization as we wrap up 2024 and head into our 50th Anniversary year!

LINKS

2025 United in Hope Conference - Prader-Willi Syndrome Association | USA

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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

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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 [email protected]

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

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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 

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