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PWS United
PWS UnitedEp80: What's in Store for PWSA | USA in 2026?In this New Year kickoff episode of PWS United, we're sharing an inside look at what’s in store for PWSA | USA in 2026. After reflecting on the organization’s momentum coming out of its 50th Anniversary year, our podcast co-host Carrie interviews several staff members to ask one simple question: What are you most excited about working on this year? Listeners will hear highlights about upcoming programs, expanding resources, social media initiatives, community events, and the passion fueling the work ahead. This episode offers a preview of the plans, priorities, and people dedicated to supporting individuals with Prad...
2026-02-1725 minPWS United
PWS UnitedEp79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding TubesThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header Residential Providers Conference - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS Rare Disease Day-15 Ways to Raise Awareness Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Plunge for PWS - Campaign Email Anne at africke@pwsausa.org to be ch...
2026-02-1035 minPWS United
PWS UnitedEp78: Miriam Chernick: Educating the CommunityWe’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that...
2026-02-0335 minPWS United
PWS UnitedEp77: Limits, Perspective, and Mental WellnessThis episode focuses on mental wellness, with guest Denise Rickenbach MA LMFT LADC. Denise is an Adlerian-trained Licensed Marriage and Family therapist as well as a Licensed Alcohol and Drug Counselor (LADC). Denise’s interests include addiction, codependency, family systems, anxiety, depression, obsessive compulsive disorder, grief, life transitions, and strained relationships. She was a speaker at the 2025 United in Hope conference and is the sister of PWSA | USA's beloved family support coordinator – Kristi Rickenbach. Kristi and Denise both joined Carrie and Anne on this episode on mental wellness to talk about what addictive behavior may look...
2026-01-2756 minPWS United
PWS UnitedEp76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT TestimonialThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Rare Aware Art Share Rare Aware Art Share Back for 2026: PWS Advocacy and Awareness - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Clint Hurdle Hot Stove Dinner Hub - Prader-Willi Syndrome Association | USA PWSA | USA EVENTS Webpage PW...
2026-01-2149 minPWS United
PWS UnitedEp75: Global PWS Registry 2.0The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community.  Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa S...
2026-01-131h 06PWS United
PWS UnitedEp74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Events | Fundraisers D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA 2026 Residential Providers Conference - Prader-Willi Syndrome Association | USA 2026 Moms' Retreat - Prader-Willi Syndrome Association | USA 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Angel Drive Ho...
2026-01-0625 minPWS United
PWS UnitedEp73: Stacy's End of Year Message2025 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research. This episode is a message from PWSA | USA CEO Stacy Ward about the incredible work done by PWSA | USA staff, volunteers, and supporters throughout this past year, along with our deep and heartfelt gratitude. Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com
2025-12-3010 minPWS United
PWS UnitedEp72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-UpThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action - YouTube PWSA Memory PWSA Library - Prader-Willi Syndrome Association | USA Events | Fundraisers Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida Inicio - Asociación del Síndrome de Prader-Willi | Florida A Bow for Áine Mirella: A Night of Mus...
2025-12-2335 minPWS United
PWS UnitedEp71: Christian Garzia: Humor, Fairness, and ProtectionWe’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. Dorothea spoke with 15-year-old Christian Garzia, the younger brother of Rocco, a 21-year-old living with PWS. Christian brings some humor to this conversation and talks about wha...
2025-12-1622 minPWS United
PWS UnitedEp70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships StudyThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action: Carol's Story PWSA Memory 1997_Vol-XXII-N4-Sept-1997.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause Thank You...
2025-12-0928 minPWS United
PWS UnitedEp69: Joe Gill: Inclusion, Purpose, and the Little ThingsWelcome to another episode in our podcast series, Sibling Advocacy, where we speak with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them.  Today's episode, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, an almost 20-year-old living with PWS. Joe talks about growing up with PWS in the house, what inclusion looks like for Gavin, t...
2025-12-0240 minPWS United
PWS UnitedEp68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research SpotlightThe latest in PWSA | USA events and PWS news in advocacy, family support, and research. 24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays. Preparing for the Holidays Blogs/Resources: Celebrate Thanksgiving Safely Tips and Techniques for a Safe Holiday Season Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs A Letter to Friends and Family PWSA Memory: September 1997 edition of The Gathered View Spotlight on Hope: Share your submission! 2025 Angel Drive Campaign: Cli...
2025-11-251h 00PWS United
PWS UnitedEp67: Broken Systems, Enduring Love, Single Caregivers SeriesCarrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS. This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is an important and beautiful episode, for its rawness, the vulnerability and willingness of the parents to share their stories...
2025-11-1855 minPWS United
PWS UnitedEp66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, GratitudeThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy PWSA Memory 1993_Vol-XVII-N5-Sept-Oct-1993.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope S...
2025-11-1136 minPWS United
PWS UnitedEp65: Grit, Grace, and Family, Single Caregivers SeriesOn today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being  a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care for your loved one so you may find a piece of yourself again, or simply finding time for a much-needed nap. They also talk about...
2025-11-0445 minPWS United
PWS UnitedEp64: Henry McDonald: Dynamic Duo, SuperheroThe next episode in our podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them.  Today's episode, led by Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS).  Henry is an insightful 14-year-old who refers to him and his sister as the "dynamic duo". He shares his perspective on PWS, how it...
2025-10-2833 minPWS United
PWS UnitedEp63: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live AuctionEp63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Prader-Silly Live Auction Prader Silly: A Night of Rare Laughs PWSA Memory 2001_Vol-26-N5.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Golf | The RMC Foundation PWSA Fundraising Pages - Campaign Spotlight on Hope A...
2025-10-2136 minPWS United
PWS UnitedEp62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting SuccessLink to session material: Emotional Regulation Strategies This episode is from a session from our International United in Hope PWS Conference and was recorded on June 28, 2025. ”Teaching Emotional Regulation in Individuals with Prader-Willi Syndrome: ABA Strategies for Lasting Success,” was presented by Kasey Bedard, PhD, BCBA-D assistant professor at The Chicago School. Kasey discusses why emotional regulation is challenging for people with PWS, why tantrums occur, self-regulation vs co-regulation, how to teach emotional regulation skills, and more.  This episode is another great resource for families and caregivers of individuals living with Prade...
2025-10-1458 minPWS United
PWS UnitedEp61 Pulse 132: Gala Recap, DUR Boards, TREND Journey Prompts, Bullying Prevention MonthThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Gala Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA - Prader-Willi Syndrome Association | USA Tribute Video: Celebrating 50 Years of PWSA | USA! PWSA | USA's Journey of Hope Gala Photo Gallery PWSA Memory 1987_Vol-XIII-N4-Jul-Aug-1987.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers 2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | U...
2025-10-0730 minPWS United
PWS UnitedEp60: Rockie Penta: Caregiver, Roommate, Best FriendWe are beginning a new podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them.  Today's episode, led by Elaine Towle, PWSA | USA Advocacy Specialist and mom to Jim (39, living with PWS), is with Rockie Penta. Rockie is the younger sibling of Victor Penta, a man well-known in the PWS community. Victor is on PWSA | USA's Adults with PWS Advisory Board and has traveled t...
2025-09-3026 minPWS United
PWS UnitedEp59 Pulse 131: Virtual Gala Auction, Care Until Cure, Give Kids a Chance Act, NICU and NewbornsThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Gala Live Auction PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION 50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf PWSA Memory 1982_Vol-VIII-N5-Sept-Oct-1982.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSA | USA's 50th Anniversary: Journey of Hope Gala - Campaign Fundraisers 2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA Cocktails for a...
2025-09-2338 minPWS United
PWS UnitedEP58: Recognizing the Unsung Heroes of PWSDirect Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day. This week our CEO, Stacy Ward, sat down with three DSPs from the community to discuss what it is like working with individuals with PWS, how these individuals affect their lives, advice they have for DSPs coming...
2025-09-1645 minPWS United
PWS UnitedEp57 Pulse 130: Direct Support Professionals Week, DUR Written Testimony, Recursos en EspañolThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Direct Support Professionals Week In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA PWSA Memory The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndrome Association | USA Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Hotel Options: Where Can We Tak...
2025-09-0934 minPWS United
PWS UnitedEP56: Celebrating One Year of PodcastingPWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire new listeners to take advantage of this incredible resource for the PWS community. Share this podcast with a friend or family member to help spread PWS awareness. Submit your podcast topic idea to pwsunitedpodcast@gmail.com or communications@pwsausa.org 
2025-09-021h 07PWS United
PWS UnitedEP55: Hope, Perseverance, and Soleno's Path to an FDA-Approval for Prader-Willi SyndromeHow does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment?    On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi syndrome 4 years of age and older. Anish, Kristen, and Dorothea discuss the unique obstacles they faced along the way to FDA approval and how...
2025-08-2623 minPWS United
PWS UnitedEp55 (Bonus Episode!): Leave a Lasting Legacy with PWSA | USAAugust is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community. Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s Board of Directors and dad to David. Together, they talk abo...
2025-08-2128 minPWS United
PWS UnitedEP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPsThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Planned Giving Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA Planned Giving | PWSA USA PWSA Memory Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD - Pra...
2025-08-1929 minPWS United
PWS UnitedEp53: Empowering Families with Dr. Destiny Pacha, Parent SubmissionsOn today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.   Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her discussion time with caregivers. She created a form for people to submit questions and then came onto the podcast to share those responses with our community. Topics included why or why...
2025-08-1257 minPWS United
PWS UnitedEp52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences WebinarThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.   24 Hour Crisis Line: 941-312-0400  Make-A-Will Month  Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA  Planned Giving | PWSA USA  PWSA Memory  PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - Prader-Willi Syndrome Association | USA  Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA  Events   PWSAUSA 50th Anniversary: Journey of Hope Celebration...
2025-08-0536 minPWS United
PWS UnitedEp51 ADA History and AdvocacyOn this week’s episode of PWS United, we celebrate the 35th Anniversary of the signing of the Americans with Disabilities Act (ADA). The ADA has been monumental in protecting individuals with disabilities from anti-discrimination legislation and ensuring the legal rights of individuals with disabilities to live, work, and receive services in our society. In our discussion of the ADA, we dip briefly into the history of the modern disability rights movement that led up to the signing of the ADA, from the League for the Physically Handicapped in 1936, to Judy Heumann and the 20 day protest in 1977 th...
2025-07-2955 minPWS United
PWS UnitedEp50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf GimmesThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 50th Anniversary PWSA Memory: Volume33-Number4.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign 2025 United in Hope International PWS Conference Recap-General 2025 United in Hope International PWS Conference Video Fundraisers No Gimmes for Jimmy - Campaign PWSA Fundraising Pages - Campaign Spotlight o...
2025-07-2227 minPWS United
PWS UnitedEp 49: Endocrine in Teens and Adults: Conference SessionThis episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of growth hormone therapy in those who have completed their growth, including risks and possible benefits and the indications for ongoing sex steroid therapy in adults with PWS. In this...
2025-07-1556 minPWS United
PWS UnitedEp48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement LetterThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 United in Hope Conference United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference 2025 United in Hope International PWS Conference - YouTube PWSA | USA 50th Birthday Party Drone Show Submit conference testimonials to africke@pwsausa.org or communications@pwsausa.org 50th Anniversary PWSA Memory: 1975-_-Vol-I-N1-July-1975.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA ...
2025-07-0848 minPWS United
PWS UnitedEp 47: Nutrition Recommendations for PWS: Conference SessionThis episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role.  Nutrition Slides from Michael Tan's session: https://www.pwsausa.org/wp-content/uploads/2025/07/PDF-Nutrition-Slides.pdf To share your conference testimonial on the PWS United podcast, please email africke@pwsausua.org   ...
2025-07-0156 minPWS United
PWS UnitedEp46: Pioneers in PWS Series - The Parent Mentoring ProgramThis is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating PWSA | USA's 50th Anniversary! Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community-one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA's 50th anniversary, we're diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these...
2025-06-1728 minPWS United
PWS UnitedEp45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, LivestreamThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Scoliosis Awareness - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference How-to-Download-the-2025-United-in-Hope-PWS-Conference-Mobile-App.pdf 2025 United in Hope Welcome Packet 2025Family-Agenda-2.pdf 2025ClinicalScientific-Agenda.pdf 2025ProfessionalProviders-Agenda.pdf 2025Adults-with-PWS-Agenda.pdf 50th Anniversary PWSA Memory: 1990_Vol-XVI-N1-Jan-Feb-1990.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
2025-06-1032 minPWS United
PWS UnitedEp 44: PWSA, IPWSO, FPWR: United in HopeOn June 24-28 families and providers in the PWS community from around the world will be gathering in Phoenix, AZ for the 2025 United in Hope International PWS Conference. This is the first ever joint conference between PWSA | USA, FPWR and IPWSO, which symbolizes a historic milestone in the PWS community This groundbreaking event will shape the future of PWS research and care. In this episode, we have a conversation between the three organization heads, Susan Hedstrom, Marguerite Hughes, and of course, our own Stacy Ward. They spoke about what this conference collaboration means for the PWS community...
2025-06-0323 minPWS United
PWS UnitedEp43: All Things ConferencePWS United hosts Carrie Ilijevich and Anne Fricke sat down with Kristi Rickenbach, PWSA | USA Parent Support Coordinator and frequent guest on the podcast, and the woman behind so much of the intricate and incredible planning, PWSA | USA’s Events Coordinator, Angela Frazier, for a conversation about all things conference. They covered many topics including the mobile app for conference, getting around the grounds and the venue, food availability and meal planning, staying cool in the Arizona heat, PWSA | USA's 50th birthday celebration, and more.  Home - 2025 United in Hope PWS Conference 2025 Pre-Conference Feedback Survey ...
2025-05-2737 minPWS United
PWS UnitedEp42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim GardnerThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference Clinical and Scientific Program High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events The Zuzu Secret N...
2025-05-2027 minPWS United
PWS UnitedEp41: PWS Origin Stories, Success, and AwarenessPWSA | USA staff members Sarah Kasaby, Melanie Zalman, Charles Conway, Elaine Towle, and Kristi Rickenbach, are parents of loved ones with PWS. On this episode of PWS United, they share their PWS origin stories, how things have changed since the early days of their PWS journey, and their favorite ways to spread PWS awareness. Honesty, wisdom, support, pride in their loved ones, and hope for the future permeate this episode - an inspiring way to celebrate PWS Awareness Month for all of May, focusing on May 15 as PWS Awareness Day! Find ways you can help spread awareness at our  P...
2025-05-1347 minPWS United
PWS UnitedEp40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall SummaryThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: PWSA-Pulse-May-2021.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Financial Security Webinar: Webinar Registration - Zoom Fundraisers
2025-05-0641 minPWS United
PWS UnitedEp39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark TherapeuticsIn this episode of PWS United, we explore the science and hope behind Aardvark Therapeutics’ ARD-101, an investigational treatment currently in its Phase 3 clinical trial for Prader-Willi syndrome. Our guests, Dr. Tien Lee, CEO of Aardvark Therapeutics, and Dr. Manasi Jaiman, Chief Medical Officer, break down the difference between hunger and appetite, and how ARD-101 targets gut-brain signaling to reduce hyperphagia. Dr. Lee and Dr. Jaiman also share insights into Aardvark’s uniquely compassionate approach to clinical trials, including their close engagement with the PWS community. Tune in to learn how this innovative therapy could impact the futu...
2025-04-2922 minPWS United
PWS UnitedEp38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security WebinarThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  VYKAT XR Town Hall: Meeting Registration - Zoom United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary PWSA Memory: 1976_Vol-II-N1-Jan-1976.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Financial Security Webinar: Webinar Registration - Z...
2025-04-2245 minPWS United
PWS UnitedEp37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1sOn this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator and the woman behind Ask Nurse Lynn. We pulled three previous submissions to discuss on this episode, based on some common questions that families in the PWS community have. Nurse Lynn discussed when and why to start growth hormone, tips for helping your loved one with skin-picking issues, and what are GLP-1s and why they may or may not work on individuals with PWS.  Our Ask Nurse Lynn library is growing by the week! Please take a moment to look through those a...
2025-04-1529 minPWS United
PWS UnitedEp36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling GuideThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  Please remember to leave a rating and a review.    PWSA | USA’s Annual Report:   Online Flipbook United in Hope Conference Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary PWSA Memory: Pioneering geneticist Merlin G. Butler, M.D., Ph.D., keeps pushing the boundaries of science Share...
2025-04-0832 minPWS United
PWS UnitedEp35: PWS and Sibling SupportOn the podcast today is our beloved Parent Support Coordinator Kristi Rickenbach, along with Board members Denise Servais and Lisa Lamb, and Marketing and Communications Coordinator, Anne Fricke. They are all parents of multiple children, including a child with Prader-Willi syndrome.  In their conversation, they discussed feelings of getting it wrong - of over-managing social situations and lives, letting siblings take on perhaps too much responsibility, over-compensating for the challenges of PWS and time spent with the child with PWS, and other feelings of inadequacies. They discuss the importance of quality time, making sure the s...
2025-04-0145 minPWS United
PWS UnitedEp34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with TirzepatideThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  Awareness Topics Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA 2025 DD Awareness Month: We’re Here All Year! – NACDD Women in PWS: Moving Forward Together - Prader-Willi Syndrome Association | USA What is neurodiversity? - Harvard Health Neurodiversity and Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA United in Hope Conference High-Level 2025 Conference Schedule Hom...
2025-03-2538 minPWS United
PWS UnitedEp33: Special Education and the Department of Ed.PWSA | USA’s CEO Stacy Ward sat down with educator and IEP coach, Jamilah Bashir to discuss special education and the state of the Department of Education. They discussed training for special education teachers, the voucher program, where to find good information about changing policies and decisions within the Department of Education, and the path of an executive order. Jamilah clarified the different roles of the U.S. Dept. of Ed. versus the state’s Dept. of Ed., focusing on funding and the accountability of states to provide services. This discussion can provide clear insight on the role of the...
2025-03-1842 minPWS United
PWS UnitedEp32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community PublicationsThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  Events United in Hope Conference Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems Home - 2025 United in Hope PWS Conference Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA For info on sponsorship opportunities: development@pwsausa.org 50th Anniversary Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Share y...
2025-03-1145 minPWS United
PWS UnitedEp31 PWS Awareness Starts Here: Fundraising with Hope United & United We BrunchOn today's episode, we’re diving into the power of peer-to-peer fundraising through PWS Hope United—PWSA | USA’s platform that lets community members create fundraisers that fit their passion and comfort level. From simple online fundraisers to large-scale in-person events, PWS Hope United provides opportunities for anyone to raise critical funds that support our family services, advocacy efforts, and groundbreaking research for PWS. This episode features interviews with members of PWSA | USA's Development Team to talk about how you can get involved in PWS Hope United. We're also joined by board member and PWS mom Ka...
2025-03-041h 32PWS United
PWS UnitedEp30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to ActionThe latest in PWSA | USA events and PWS news in research, family support, and advocacy.  Events Rare Disease Day Rare Disease Day Hub: PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Live Stream: Rare Disease Week - Attendee Corner Virtual Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Day 2025 – Join Us! Rare Disease Week Advocacy Calls to Action: Join Rare Disease Week Advocacy from Home - Prader-Willi Syndrome Association | USA U...
2025-02-2538 minPWS United
PWS UnitedEp 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory BoardIntroducing Pioneers in PWS, a new podcast series from PWS United in honor of PWSA | USA's 50th Anniversary! Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community—one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA’s 50th anniversary, we’re diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to exp...
2025-02-1853 minPWS United
PWS UnitedEp28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job AnnouncementThe 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 Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems Home - 2025 United in Hope PWS Conference For info on sponsorship opportunities: development@pwsausa.org Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Prader-Willi Hot Stove | Powered By GiveSmart Donate to Diamonds & Denim 2025
2025-02-1138 minPWS United
PWS UnitedEp27: Advocacy with Terry Wilcox from Patients RisingTerry 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 Hug...
2025-02-0446 minPWS United
PWS UnitedEp26: Clinical Trial Perspectives Part 1Justice 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...
2025-01-2850 minPWS United
PWS UnitedEp25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, SertralineThe 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: development@pwsausa.org 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
2025-01-2139 minPWS United
PWS UnitedEp24 TREND & PWS ConnectThis 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...
2025-01-1458 minPWS United
PWS UnitedEp 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community StoriesListen 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...
2025-01-0731 minPWS United
PWS UnitedEp22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The HolidaysIn 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...
2024-12-2434 minPWS United
PWS UnitedEp21 Meet the PWSA | USA StaffMeet 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...
2024-12-171h 55PWS United
PWS UnitedEp20 Pulse 112: Angel Drive, Georgia Advocacy, Growth Hormone, Clinical Trial JourneyThe 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@gmai...
2024-12-1036 minPWS United
PWS UnitedEp19 Caring for the CaregiverAs 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 Care...
2024-12-0337 minPWS United
PWS UnitedEp18 National Adoption Month, Adopting a Loved One with PWSNovember 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...
2024-11-2642 minPWS United
PWS UnitedEp17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia StudyThe 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...
2024-11-1943 minPWS United
PWS UnitedEp16 Self-Care, Self-Advocacy, and GratitudePWSA | 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...
2024-11-1258 minPWS United
PWS UnitedEp15 Pulse 110: Angel Drive Kick-Off, NORD Summit, Family Caregiver Month, Clinical Trial JourneyThe 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.p...
2024-11-0746 minPWS United
PWS UnitedEp14: Adults with PWS Advisory BoardPWSA | 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 | US...
2024-10-2922 minT-Minus Space Daily
T-Minus Space DailyDIU lifeline for Astra.Astra has been awarded a contract by the US Defense Innovation Unit (DIU) with a ceiling of up to $44 Million. Redwire has announced three new partnerships on biopharmaceuticals experiments that will launch to the ISS aboard the SpaceX-31 cargo resupply mission. Umbra has been awarded a multi-million dollar contract by the Space Development Agency (SDA) to demonstrate the feasibility of integrating its commercial remote sensing capabilities into SDA’s Proliferated Warfighter Space Architecture (PWSA), and more.Remember to leave us a 5-star rating and review in your favorite podcast app.Miss an episode? Sign-up for ou...
2024-10-2325 minPWS United
PWS UnitedEp13 Pulse109: Physical Therapy Month, Dominique Valenti, FDA Meeting, PWS Book ReviewUpdates 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
2024-10-221h 10PWS United
PWS UnitedEp12 PWS Parent Clint Hurdle Shares Advice for Dads, Personal StoriesIn 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...
2024-10-1541 minPWS United
PWS UnitedPulse 108: Prepare for Holidays, New Staff, Operation Holiday Cheer, & MoreThe 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...
2024-10-0845 minFilmsmakarna Podcast
Filmsmakarna PodcastDeath Race (2008, Jason Statham, Tyrese Gibson, Ian McShane)Vi kör igång vårat Paul W. S. Anderson-tema med Death Race från 2008 (som är en remake av filmen Death Race 2000 från 1975)! PWSA tillsammans med Jason Statham kan väl inte bli annat än succé, eller hur?   Death Race (2008): "En före detta speedwaymästare är felaktigt dömd för ett mord som han inte begått - och för att bli fri måste han tävla i en brutal biltävling, där priset för en förlust är döden."   Superlänk till alla våra plattforma...
2024-10-031h 23PWS United
PWS UnitedEp10 Clinical TrialsAs 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...
2024-10-0149 minPWS United
PWS UnitedPulse 107: Service Dogs, Podcast Update, Narcolepsy Spotlight, & MoreCatch 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 & S...
2024-09-2442 minThe James Protin Podcast
The James Protin PodcastAll For One…One For All with George Robinson II | The James Protin PodcastGeorge Robinson II is Director of Supplier Diversity & Inclusion for UPMC.  He joined UPMC in April 2018 to enhance strategic planning and execution in the UPMC Supplier Diversity Program. George brings to this position over 20 years of experience in Business and Engineering Administration, Government Management and Diverse Business Development. Prior to joining UPMC, George was responsible for the creation of Development (Real Estate) Services Group as Manager of Development Services for The Pittsburgh Water and Sewer Authority (PWSA). Before relocating to Pittsburgh in 2013, he last served as Deputy Director of Public Utilities for the City of Tol...
2024-09-1827 minPWS United
PWS UnitedEp8 Direct Support Professionals Week Panel DiscussionIn 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 Ma...
2024-09-1748 minPWS United
PWS UnitedEp7 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...
2024-09-1041 minPWS United
PWS UnitedEp6 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...
2024-09-0340 minPWS United
PWS UnitedBack 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.  L...
2024-08-3010 minPWS United
PWS UnitedAdvocating 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...
2024-08-3035 minPWS United
PWS UnitedEdition 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
2024-08-3019 minPWS United
PWS UnitedPWS 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...
2024-08-3045 minPWS United
PWS UnitedPWS Connect Teaser(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...
2024-08-2305 minCRE Views with NAIOP Pittsburgh\'s Developing Leaders
CRE Views with NAIOP Pittsburgh's Developing LeadersPWSA, Updates with Julie Asciolla. S5E1 In this episode, Julie Asciolla wiht PWSA answers questions and updates us on the happenings PWSA and an upcoming Developer Roundtable on April 3rd. Developer round table Registration link: https://www.pgh2o.com/news-events/events-meetings/2024-04-03-2024-developers-roundtable. Podcast production music and narration by Beautyrock NYC. --- Send in a voice message: https://podcasters.spotify.com/pod/show/naiop-pittsburgh-dl/message
2024-03-2522 minCity Cast Pittsburgh
City Cast PittsburghZoo Deaths, Water Quality & What Went Wrong on the Fern Hollow BridgeIt’s the Friday news roundup! The National Transportation Safety Board released its findings into the cause of the 2022 Fern Hollow Bridge collapse, the zoo closed for a day out of respect for recent animal deaths, and Presidential election season is heating up in Pittsburgh. We’re talking about our improved water quality and what, if anything, it means to have so many national political leaders darken our regional door.We always cite our sources: You can watch the animation summarizing what led up to the Fern Hollow Bridge collapse. PublicSource did a great job explaining what...
2024-02-2330 minThe Elara Edge
The Elara EdgeRevolutionizing Missile Warning with the Proliferated Warfighter Space ArchitectureIn 2023, the Space Development Agency (SDA) launched its initial round of satellites for its Proliferated Warfighter Space Architecture (PWSA) with the intention of modernizing the missile warning architecture watching over our nation. The SDA followed this up with a second successful launch in September 2023, with one final launch for its Tranche 0 satellites slated for sometime later this year. These launches demonstrate the changing dynamics of the space domain and provide a glimpse into how the Space Force and the Space Development Agency are seeking to revolutionize its procurement process to meet the pacing threat. In this episode...
2023-11-2716 minDialed In to Science
Dialed In to SciencePossible Russian Mission Luna 25 crash-landing creates new moon crater, images from NASA reveal. SpaceX targets September 2 for Falcon 9 launch, deploying military satellites for PWSA. Watch live on Space.com. "James Webb Space Telescope Captures Stunning Supernova Image, Unveiling Stellar Explosion Details". ISRO to Launch Solar Observatory to Study Sun's Mysteries, Solve Corona Heating Problem. "Rare Blue Supermoon Shines Worldwide, Stunning Photographers".LinksPossible Russian Mission Luna 25 crash-landing creates new moon crater, images from NASA reveal. (00:00:11)SpaceX targets September 2 for Falcon 9 launch, deploying military satellites for PWSA. Watch live on Space.com. (00:00:53)"James Webb Space Telescope Captures Stunning Supernova Image, Unveiling Stellar Explosion Details" (00:01:37)ISRO to Launch Solar Observatory to Study Sun's Mysteries, Solve Corona Heating Problem. (00:02:23)"Rare Blue Supermoon Shines Worldwide, Stunning Photographers" (00:03:09)Timestamps(00:00) - Intro(00:00:11) - Possible Russian Mission Luna 25 crash-landing creates new moon crater, images from NASA reveal.(00:00:53) - SpaceX targets September 2 for Falcon 9 launch, deploying military satellites for PWSA. Watch live...
2023-09-0100 minCity Cast Pittsburgh
City Cast PittsburghWater Hikes Are Coming — Here’s What You Can DoWater rates could rise as much as 70% over the next three years, and as homeowners, you stand to pay a lot more than a big commercial business. City Cast Pittsburgh host Megan Harris chats with Ann Belser, the editor and publisher of Print, about why PWSA says it needs so much more money, how the state’s getting involved, and what you can do to have your voice heard before the price per gallon goes up.Ann’s work also publishes online with NEXTpittsburgh. Check out her piece detailing why the rate hike got delayed fr...
2023-07-2414 minT-Minus Space Daily
T-Minus Space DailyHyped for Hypersonic.Purdue University’s Applied Research Institute opened the doors to a new 65,000-square-foot Hypersonics and Applied Research Facility. ULA achieves a nominal six-second test fire of the two BE-4 engines of the Vulcan Centaur rocket. Firefly Aerospace has acquired Spaceflight Inc. for an undisclosed amount, and more.Remember to leave us a 5-star rating and review in your favorite podcast app.Miss an episode? Sign-up for our weekly intelligence roundup, Signals and Space, and you’ll never miss a beat. And be sure to follow T-Minus on Twitter and LinkedIn.T-Minus GuestTo...
2023-06-0829 minOut Of The Blank
Out Of The Blank#1412 - CarrieLynn D. ReinhardCarrieLynn D. Reinhard is an Associate Professor in Communication Arts and Sciences at Dominican University where she teaches digital communication technologies, media production, and research methods. Carrie is back to discuss her work at "Professional Wrestling Studies Association" (PWSA) an association whose purpose is to bring together scholars, bloggers, journalists, fans, wrestling insiders, and other professionals from around the world to discuss, analyze, and critique different aspects of professional wrestling. --- Support this podcast: https://podcasters.spotify.com/pod/show/out-of-the-blank/support
2023-05-181h 07Water Values Podcast
Water Values PodcastUtility Leadership, Pittsburgh Style with Will Pickering Will Pickering, the CEO of the Pittsburgh Water & Sewer Authority, provides a master class in utility leadership covering a wide range of issues from capital programs to the art of building trust with your customers. Plus, Reese Tisdale joins us for a Bluefield on Tap segment discussing some interesting economic information in the water sector. In this session, you’ll learn about: Will’s background  How Will navigated starting at PWSA during the pandemic PWSA’s lead service line (LSL) replacement program Why PWSA does not undertake partial LSL replacements How the LSL replacement program helped rebuild...
2023-05-0247 minExiting Through The 2010s
Exiting Through The 2010sResident Evil: Retribution and Resident Evil: The Final Chapter with Joshua PolanskiJosh Polanski (The Boston Hassle) joins us for a retrospective on the finale of the PWSA films for the much-maligned Resident Evil franchise in 2012’s Retribution and 2016’s The Final Chapter. Together, we examine Michelle Rodriguez’s career, updating video games into films, viewing the franchise through a theological lens and what we watched on January 6th
2023-03-253h 44Let\'s Talk: Conversations with The Arc of NJ Family Institute
Let's Talk: Conversations with The Arc of NJ Family InstituteTell Us About... Prader-Willi Syndrome (PWS)This episode features a conversation about Prader-Willi Syndrome (PWS) and the different resources available for families who have a child with PWS. We were joined by Paige Rivard, CEO of the Prader-Willi Syndrome Association of the United States (PWSA-USA), and Dorothea Lantz, PWSA-USA's Community Engagement Specialist.
2022-04-1551 minThe Hope-Makers
The Hope-MakersEpisode 16. How I learned to parent a child with Prader-Willi Syndrome, with Anne FrickeIn this episode I interview Anne Fricke, host of 'Walking with Freya' a podcast serving special needs families, about her experiences of raising her daugther Freya who has Prader Willi Syndrome. We speak about the challenges, fears and gifts that this diagnosis brings and Anne provides some sound advice for others who may be facing the same reality.May is also Prader-Willi Awareness month and so if you are keen to find out more you can do so by visiting these websites:https://www.nhs.uk/conditions/prader-willi-syndrome/Prader-Willi Syndrome Support Association: https...
2021-05-0350 minHotbox the Cinema
Hotbox the Cinemaep. 19: smokin on that... mountain dewon the latest hotbox the cinema, we hunt and gather new ideas about the recent big-screen adaptation of capcom's Monster Hunter franchise, directed by cinema's ultimate wife guy paul ws anderson & starring milla jovovich and tony jaa. topics we go after include the video game adaptations of PWSA, the hawksian tendencies of class-based RPGs, the unexpected direct influence of metal gear solid on the monster hunter movie, & supply-chain cinema. in the Unboxing opening segment we get into the ring to talk about the training montages of rocky IV and creed 2, the latest wrestlemania, & the late great dmx, who once was...
2021-04-161h 40The Pittsburgh Record
The Pittsburgh Record1/27/20: Lead and sewage: two updates on Pittsburgh's waterIt's Monday, January 27, 2020. In today's episode:    * The newest round of drinking water sample testing shows that PWSA has dropped below federal action thresholds for lead, while a recently released RAND study shows that Pittsburgh's sewage overflows total billions more gallons of pollution into our rivers than previously thought  * And more news items from the city of Pittsburgh and our region   The Pittsburgh Record, from Postindustrial Media, is created by Adam Shuck and edited by Matt Stroud, with music by Phil Ortmann and sound editing by Tim Mulhern.  
2020-01-2710 minAllegheny Institute - Lincoln Radio Journal
Allegheny Institute - Lincoln Radio JournalPUC and PWSA“Allegheny Institute's research, education and advocacy work to defend taxpayers and businesses against the burdensome taxation, inefficiency and intrusiveness of an ever expanding government.”
2017-07-1609 minWrestle Radio Australia
Wrestle Radio AustraliaWRA - The SA Announcers RoundtableListen in as Josh Armour, Wolfdogg, Luke Hazard & Paul Roberts chat about the past 20-odd years of South Australian wrestling.From PWSA & "the big split" to the variety we have today, the lads share their experiences, some great stories and heaps of laughs!  @WrestleRadioAU @JoshJDArmour @RCWrestling @PowerslamTV @AusAllstars @WRAustralia http://www.facebook.com/AustralianIndyWrestling Visit WRESTLEMERCH on Facebook. FNX.NETWORK - Theme song 'Where The Action Is' by @Thunderstag  ---Episodes from our original feed are on our YouTube channel - ORIGINAL skits and intervi...
2015-08-041h 41Positively Pittsburgh Live!
Positively Pittsburgh Live!Positively Pittsburgh Live! Jazz Festival, Arts Festival, Cinema in ParkPPL Co-Host: JoAnn F orrester host of PPLMag Anchor Podcast, Empress of Biz| WHERE IN THE WORLD IS TECHNOGRANNY? Kassab's Middle Eastern, Southside| Central Diner, Robinson| CULTURAL CLUES: MCG Jazz and PSO Pittsburgh Jazz Celebration | Ginger Baker, Pittsburgh Jazzlive International Festival| New Horizon Theater presents The Dance on Widow's Row| The Pittsburgh Jazz Celebration with PSO| Vascular Caverns Artist Gianna Paniagua Three Rivers Arts Festival thru June 14 Mary Poppins at CLO, Half Price for Kids Disney in Concert at PSO| KIDZ KORNER: Brookline Youth Soccer| Spray Parks open | WOMEN AND GIRLS ADVANCEMENT : Strong Women Strong Girls: 2015 Strong Awards Nomination | Southwestern...
2015-06-0800 min