PWS United

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 https://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 africke@pwsausa.org 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: info@pwsausa.or​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: africke@pwsausa.org 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: psychresearch@maimo.org 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.  Helpful links PWSA | USA Dads Facebook Group (Private): https://www.facebook.com/groups/PWSAUSA.Dads  PWSA | USA's Website: https://www.pwsausa.org/

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

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)

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