Shows
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 min
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 min
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 min
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 min
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 00
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 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 min
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 min
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 min
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 07
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 32
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 min
Space Technology Industry News"The Booming Space Tech Industry: Fueling Innovation and Investment"The space technology industry is experiencing rapid growth and transformation, driven by advancements in technology, increased private sector investment, and rising demand for space data and related products and services. According to Deloitte, the global space sector attracted private equity investments of about $272 billion into 1,791 unique companies since 2013, with 2022 being a record year for the space sector with 186 successful rocket launches[2].Recent market movements indicate a significant increase in satellite launches, particularly in Low Earth Orbit (LEO). By the end of this decade, the number of active satellites could reach as many as 50,000, with companies like SpaceX, Amazon...
2025-02-2003 min
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 min
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 min
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 minSpace Technology Industry NewsThe Space Industry Soars: Trends & Opportunities for 2025The space technology industry is poised for significant growth and transformation in 2025, driven by advancements in technology, increasing investment, and emerging trends. According to the World Economic Forum's Space Economy report, the industry is expected to grow to $1.8 trillion over the next 11 years[1].One of the key drivers of this growth is the proliferation of Low-Earth Orbit (LEO) satellites. By the end of this decade, the number of active satellites could reach as many as 50,000, with major players like Amazon's Project Kuiper, BAE Systems' Azalea, and AST SpaceMobile's Block 2 BlueBird satellites leading the charge[1]. SpaceX's Starlink constellation, which...
2025-01-3003 min
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 min
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 minSpace Technology Industry NewsThe Space Tech Boom: Reusable Rockets, Mega Constellations, and Global Expansion in 2025The space technology industry is poised for significant growth and innovation in 2025, driven by advancements in technology, increasing accessibility, and rising demand for space-based services. Here's a current state analysis of the industry:Market Movements and Deals:The global space economy is projected to reach $1.8 trillion by 2035, up from $630 billion in 2023, according to McKinsey[3]. Recent deals and partnerships include Amazon's Project Kuiper, BAE Systems' Azalea multi-satellite cluster, and AST SpaceMobile's Block 2 BlueBird satellites, all of which are planned for launch in 2025[1].Emerging Competitors:New players are entering the market, including China, which is rapidly...
2025-01-2003 minSpace Technology Industry NewsThe New Space Age: Preparing for Liftoff in 2025The space technology industry is poised for significant growth and innovation in 2025, driven by advancements in technology, increasing accessibility, and rising demand for space-based services. Here's a current state analysis of the industry:Recent market movements indicate a surge in the number of active satellites in Low-Earth Orbit (LEO), with predictions suggesting over 50,000 satellites could be in orbit by the end of 2025[1][3]. This growth is fueled by the launch of mega constellations such as Amazon's Project Kuiper, BAE Systems' Azalea, and AST SpaceMobile's Block 2 BlueBird satellites.New product launches and emerging competitors are also shaping the...
2025-01-1704 min
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 min
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 minSpace Technology Industry News"Space Technology in 2025: Opportunities and Disruptions"The space technology industry is poised for significant growth and transformation in 2025. According to the World Economic Forum's Space Economy report, the industry is expected to reach $1.8 trillion over the next 11 years, with 2025 being a pivotal year for space capabilities, regulatory developments, and global engagement.Recent market movements indicate a surge in low-Earth orbit (LEO) launches, with companies like Amazon, BAE Systems, and AST SpaceMobile planning to deploy thousands of satellites in the coming year. SpaceX continues to lead the pack with over 6,500 Starlink satellites in orbit, while China's Thousands Sails Constellation aims to launch 648 satellites by the...
2025-01-0103 min
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 min
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 55
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 min
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 min
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 min
CEO's You Should Know - PittsburghCEO, Will Pickering of Pittsburgh WaterPWSA is now: Pittsburgh Water. Pittsburgh Water, a simplified name that inspires better understanding of the life-essential services that Pittsburgh Water provides. Tap in to lear more at https://www.pgh2o.com/
2024-11-2028 min
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 min
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 min
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 min
Bluebells Forever PodcastEp 199: “I’m going to come see you in a few years in feathers and rhinestones.”Ruth Perry was told in a ballet class that one day she would be absolutely be glowing wearing feathers and rhinestones on stage.It came true when she danced at the Lido in Paris.
Ruth shares her story of her beautiful daughter’s condition Prader-Willi Syndrome with its challenges and victories. I was so moved by her fierce mamma love. or more information about Prader-Williams Syndrome, visit pwsa.co.uk
www.amazon.com/Bluebells-Forever…ast/dp/B0CJXCPB4P
NEW WEBSITE www.bluebellsforeverpodcast.com
Follow us on Instagram and Facebook to see photos and updates
www.instagram.com/bluebells_forever/
www...
2024-10-311h 14
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 min
Filmsmakarna PodcastEvent Horizon (1997, Laurence Fishburne, Sam Neill, Kathleen Quinlan)Vi avslutar vårat PWSA-tema på topp med kultrullen Event Horizon från 1997. Precis som taglinen på postern säger så bjuds det på "Infinite space" och "Infinite terror". Låt det väl smaka!
Event Horizon (1997): "En astrofysiker får chansen att delta i en räddningsaktion för att lösa mysteriet med det försvunna rymdskeppet Event Horizon år 2047. Skeppet kan resa fortare än ljuset men försvann sju år tidigare på sin jungfruresa."
Superlänk till alla våra plattformar: http://linktr.ee/filmsmakarna
#PaulWSAnderson #Event...
2024-10-241h 14
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 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 10
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 min
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 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 23
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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 min
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.
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Send in a voice message: https://podcasters.spotify.com/pod/show/naiop-pittsburgh-dl/message
2024-03-2522 min
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 min
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 min
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 min