PWS United

EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPs

The 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 - Prader-Willi Syndrome Association | USA
Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD - Prader-Willi Syndrome Association | USA
Aaron Weber Stand-Up: Having a Newborn, Urgent Care | The Tonight Show Starring Jimmy Fallon
Fundraisers
Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Michigan PWS Families - Your Voices are Needed! - Prader-Willi Syndrome Association | USA
Federal Budget Proposals Could Undermine Critical Supports for Students with Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA
PWS Advocates Participate in Rare Across America Congressional Meetings - Prader-Willi Syndrome Association | USA
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
The Importance of Caring for your Relationship - Prader-Willi Syndrome Association | USA
Empowering PWS Families in IEP Meetings – Registration for Parent Training
Ask Nurse Lynn: Bowel Blockage, Edema, and Hospital Stay - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Minneapolis, MinnesotaUniversity of Minnesota Masonic Childrens HospitalContact: Bradley Miller, MDPhone: (612) 624-5409Email: mille685@umn.edu
www.heroforpws.com
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications
Announcements/Resource Spotlight
School Success Summit - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep53: Empowering Families with Dr. Destiny Pacha, Parent Submissions

On 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 not to disclose a PWS diagnosis, service requirements in relation to public vs private schools, the differences between modifications and accommodations in an IEP, special diplomas, how to know if an IEP is being implemented, the differences between language therapy and speech therapy, and more. This discussion is a wealth of information for anyone with a child with PWS in school. Listen to this episode to learn more about IEP and school support, along with an upcoming training for parents from Dr. Pacha, “Empowering PWS Families in IEP Meetings.”
 
LINKS
Empowering PWS Families in IEP Meetings training registration: https://docs.google.com/forms/d/e/1FAIpQLSdv4Y73t_n-xjOr2QHH5J4pcvyaqGqaKB2dTqORemXzPnHZCA/viewform
 
Dr. Pacha’s website: https://www.empoweredsolutions.org/
Instagram: https://www.instagram.com/_empowered_solutions/
Facebook: https://www.facebook.com/empowerededucationsolutions
 
Sign up for our Pulse Newsletter and stay informed at: https://www.pwsausa.org/join-newsletter/
PWSA | USA Instagram: https://www.instagram.com/pwsausa/
PWSA | USA Facebook: https://www.facebook.com/PWSAUSA
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences Webinar

The 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 - Campaign 
Fundraisers 
2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA 
Contact email: mhampton0933@gmail.com
16th Annual Hunter Lens Golf Tournament - Prader-Willi Syndrome Association | USA
PWSA Fundraising Pages - Campaign 
Spotlight on Hope 
Volunteer Spotlight: Melissa Rivas - Spreading Joy, Creativity, and Hope - Prader-Willi Syndrome Association | USA 
Share Your Story - Prader-Willi Syndrome Association | USA 
Advocacy 
Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research
Medicaid-Fact-Sheet-1.pdf 
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA 
Family Support 
Understanding Gastric Motility and Gastroparesis in PWS - Prader-Willi Syndrome Association | USA 
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA  
Ask Nurse Lynn: Leptin and Hyperphagia
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA  
Research 
Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom 
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA 
www.heroforpws.com 
Announcements/Resource Spotlight 
Qualifying for Social Security Disability with PWS 
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep51 ADA History and Advocacy

On 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 that led to the late enactment of Section 504 of the Rehabilitation Act of 1973, to the inspiring Capital Crawl of 1990 just months before President Bush signed the ADA.
We invited Dorothea Lantz, PWSA’s Director of Community Engagement and mom to Hunter (8, living with PWS) on to the podcast to help us better understand how HR1 may affect Medicaid, the importance of getting involved in advocacy on a state level, and to encourage our community to join in our latest advocacy efforts.
Share your Medicaid story: Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy email: advocacy@pwsausa.org
Medicaid-Fact-Sheet-1.pdf
PWSA \ USA’s Advocacy webpage: Advocacy & Awareness - Prader-Willi Syndrome Association | USA
Introduction to the Americans with Disabilities Act | ADA.gov
2024 PWSA | USA D.C. Fly-In Documentary - YouTube
The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA
League of the Physically Handicapped (U.S. National Park Service)
Judy Heumann (U.S. National Park Service)
When the 'Capitol Crawl' Dramatized the Need for Americans with Disabilities Act | HISTORY
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf Gimmes

The 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 on Hope
Volunteer Spotlight: Pillar of Strength, Support, and Hope - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWSA | USA Helps Usher in New Era of Rare Disease Research with Launch of Florida’s Sunshine Genetics Act - Prader-Willi Syndrome Association | USA
Family Support
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Ocular Issues and Eye Patching - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Study Invitation email: harri764@mailbox.sc.edu
Recognizing and Addressing Hyperphagia Early in Prader-Willi Syndrome: Strategies and Insights for Pediatric Endocrinologists and Their Care Team
Peer-to-Peer Challenge: Interactive Case Studies in Prader–Willi Syndrome
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
www.heroforpws.com
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Prader-Willi Syndrome Glossary - PWSA | USA
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep 49: Endocrine in Teens and Adults: Conference Session

This 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 discussion you can learn more about growth hormone monitoring and deficiency, delayed or absent puberty, adrenarche vs puberty, and more. 
Visit our website at www.pwsausa.org 
 
Intro Music: https://www.bensound.com/; License certificate #2242442 
 
 

Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement Letter

The 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
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Fundraisers
Hunter Lens Golf Tournament - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Podcast
Questions for Dr. Pacha
Advocacy
advocacy@pwsausa.org
Family Support
Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA
C15 Foundation – Where Unlimited Potential Can Grow and Thrive
Pacific Northwest Map: PWSA Link: Your Guide for Prader-Willi Syndrome Support
Ask Nurse Lynn: Aging in PWS and Life Spans - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today
HarmonyPWS@science37.com
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
To-Law-Enforcement-Personnel-Regarding-Adults-with-PWS.pdf
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep 47: Nutrition Recommendations for PWS: Conference Session

This 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
 
Intro Music: https://www.bensound.com/; License certificate #2242442 
 

Ep46: Pioneers in PWS Series - The Parent Mentoring Program

This 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 articles to explore where we've been, how far we've come, and recognize the pioneers who made it possible. 
In this episode, we look back at the foundation of our parent mentoring program, how it has evolved over the years, and the incredible women who have passed the torch of support. We hear a brief testimonial from two current parent mentors about some of their favorite experiences of being a mentor. This episode closes out with an interview with the current director of the parent mentoring program, Kristi Rickenbach. She shares with us how she got involved, what she loves about this work, and ultimately, what her goal is as a parent mentor. 
You can read the original Pioneers in PWS article at Pioneers in PWS - The Parent Mentoring Program - Prader-Willi Syndrome Association | USA
As a reminder, that there will be no new episode coming out next Tuesday. We will be at the International PWS Conference in Phoenix, AZ. Our next episode of PWS United will be a LIVESTREAM from a conference session on Saturday, June 28. Learn more about the session and how to join the livestream at How To Join a PWS United Livestream on Podbean - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, Livestream

The 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
Events
Prader Silly: A Night of Rare Laughs - Campaign
Fundraisers
Hunter Lens Golf Tournament - Campaign
Hummus, Tahini, and PWS Awareness - Prader-Willi Syndrome Association | USA
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Ada Thrives and Shines - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
Adults with PWS Advisory Board Spotlight: Abbott Philson - Prader-Willi Syndrome Association | USA
Family Resource Program - Parents/Caregiver Focus Groups
Family Resource Program - Sibling Focus Groups
Recruitment – SibTime II -English - Influents Innovations
Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Get to Know Aardvark Therapeutics Phase 3 HERO PWS Study
Home | Hero Trial
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Voice of the Patient Report: VOP-Report-4.30_.pdf
PWS Externally-Led Patient-Focused Drug Development Meeting
 
Intro Music: https://www.bensound.com/; License certificate #2242442