Episodit
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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@patientsrising.org
EventsCelebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year - Prader-Willi Syndrome Association | USAPWS Rare Aware Art Share - Prader-Willi Syndrome Association | USAHome - 2025 United in Hope PWS ConferenceDiamonds & Denim 2025 - CampaignPWSA Fundraising Pages - CampaignSpotlight on HopeSpotlight on Hope: Lenny's Business Fair Breakthrough - Prader-Willi Syndrome Association | USAShare Your Story - Prader-Willi Syndrome Association | USAAdvocacyPWS Advocacy Master Class Sign up | Patient Rising CommunityFamily SupportA Global Network of Hope: How PWSA Egypt & Middle East is Transforming Lives - Prader-Willi Syndrome Association | USAAsk Nurse Lynn: Late Diagnosis and Newborn Screening - Prader-Willi Syndrome Association | USAAsk Nurse Lynn - Prader-Willi Syndrome Association | USAResearchCall for Abstracts:Conference 2025 - IPWSO -
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. 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
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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: [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 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
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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 [email protected] Space is limited so sign up now.
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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
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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
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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
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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/
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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
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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:
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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)
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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/
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(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)
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(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."
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(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 [email protected].
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
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(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
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