PWS United

Ep 44: PWSA, IPWSO, FPWR: United in Hope

On 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 and the families we support, and how conference is a place to find community, explore the experience of rarity, and share commonality amongst people with who you may have thought were worlds apart. With a combined 100 years of dedication and work in the PWS community, this conference collaboration is a momentous event for the PWS community. Susan Hedstrom has been the Executive Director of the Foundation for Prader-Willi Research (FPWR) since 2013. Her commitment to this role was deeply rooted in a personal journey that began when her eldest son was diagnosed with Prader-Willi syndrome. Faced with the challenges posed by this rare condition, Susan made a conscious decision not to accept Prader-Willi syndrome as it had been traditionally defined. Instead, she chose to collaborate with a remarkable team of proactive and tireless individuals within FPWR to find treatments and ultimately a cure for Prader-Willi syndrome. Marguerite Hughes was IPWSO’s CEO between 2019 and 2025, prior to which she served as Vice President (2016 to 2019) and Secretary (2013-2016). She has recently stepped aside however; she has kindly agreed to continue as a volunteer in an advisory capacity. Marguerite is the parent of a 20-year-old son who has PWS. She is based in Ireland.Stacy Ward, CEO of PWSA | USA, is a longtime leader in the PWS community with a background rich in non-profit, behavioral health, education advocacy and has held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director of Family Support.Thank you to the three of them for briefly stepping aside from a busy conference planning schedule to talk about this incredible upcoming event.
Learn more about this upcoming conference at Home - 2025 United in Hope PWS Conference
 
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Ep43: All Things Conference

PWS 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
 
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Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner

The 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 Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator
Prader Silly: A Night of Rare Laughs - Campaign
bipocpws@gmail.com
Fundraisers
Lyra Mills's fundraising page for Prader-Willi Syndrome Association
Filling Cups with PWS Awareness - Prader-Willi Syndrome Association | USA
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Lydia and Dalyas Dreamers - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWSA Advocates Represent Disability Needs and Rights in DC - Prader-Willi Syndrome Association | USA
PWS Awareness Month Proclamation Toolkit
advocacy@pwsausa.org
etowle@pwsausa.org
Family Support
Adults with PWS Advisory Board Spotlight: Conor Heybach - Prader-Willi Syndrome Association | USA
PWSA | USA Family Support Webinar: Creating Financial Security for a Loved One with PWS
Family Resource Program - Parents/Caregiver Focus Groups
Family Resource Program - Sibling Focus Groups
Ask Nurse Lynn: Genetics and Weight Gain - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Aardvark’s HERO Clinical Trial Webinar: Webinar Registration - Zoom
Home | Hero Trial
Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey
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
GI-Algorithm-Chart-2022.pdf
 
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Ep41: PWS Origin Stories, Success, and Awareness

PWSA | 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  PWS Awareness Month - Prader-Willi Syndrome Association | USA
 
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Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

The 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
United We Brunch - Campaign
The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Members Sought for the Drug Utilization Review Board
PWS Awareness Month Proclamation Toolkit
advocacy@pwsausa.org
etowle@pwsausa.org
Family Support
Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA
Family Resource Program - Parents/Caregiver Focus Groups
Family Resource Program - Sibling Focus Groups
Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA
Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey
Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - 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
A Letter to Friends and Family - Prader-Willi Syndrome Association | USA
 
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Ep39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics

In 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 future of care for individuals living with PWS.
We’re proud to recognize Aardvark Therapeutics as our Diamond Sponsor for the 2025 International PWS Conference – United in Hope, happening this June in Phoenix, Arizona. Visit their exhibitor table and meet many members of their team in person!
Important Links:
Learn more about Aardvark Therapeutics: https://aardvarktherapeutics.com
Learn more about the ARD-101 Phase 3 clinical trial: https://clinicaltrials.gov/study/NCT06828861?intr=ARD-101&rank=4
PWSA | USA: https://www.pwsausa.org
Contact us: info@pwsausa.org
2025 International PWS Conference: https://pwsausaevents.cventevents.com/event/04353c7a-d6b1-45f9-9d6f-48acda9cd07e/home 
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Ep38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security Webinar

The 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 - Zoom
VYKAT XR Town Hall: Meeting Registration - Zoom
NC Hope United 5K & Family Fun Run - Campaign
Zahra's Night of Light Shines Bright! - Prader-Willi Syndrome Association | USA
Fundraisers
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope Library
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWS Awareness Month Proclamation Toolkit
advocacy@pwsausa.org
etowle@pwsausa.org
Family Support
Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life - Prader-Willi Syndrome Association | USA
Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Hygiene Concerns and Solutions - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question
PWS Awareness Month - Prader-Willi Syndrome Association | USA
Research
Health Care Professionals Webinar: Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome
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
Find Your Voice: Advocating for PWS Health Care Webinar Series - YouTube
 
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Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1s

On 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 articles at Ask Nurse Lynn Archives - Prader-Willi Syndrome Association | USA
If you have a non-emergency medical question and would like a response from Lynn, please visit Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research Study of the GLP-1 Tirzepatide:Looking for participants with PWS aged 18-26.
To take part in this research study or for more information, contact the Endocrine Research Team at EndocrineResearch@seattlechildrens.org or 206-987-2540
Download our Medical Alert Book: MedicalAlertsBooklet-GIChart-2022.pdf
Download our third edition Growth Hormone booklet: Growth-Hormone-booklet-third-Edition_FINAL.pdf
 
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Ep36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling Guide

The 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 your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
VYKAT XR (formerly DCCR) informational webinar
Home | VYKAT XR (diazoxide choline) extended-release tablets
Prader-Willi Alliance of New York Inc. - Events
Fundraisers
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope Library
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWS Awareness Month Proclamation Toolkit
advocacy@pwsausa.org
etowle@pwsausa.org
Family Support
Sibling Support Guide
What It's Like to Have a Sibling with PWS - Prader-Willi Syndrome Association | USA
Send your sibling blog to africke@pwsausa.org
A Loving School is Vital - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Food-Seeking Behaviors - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
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
Q-and-A_Blue.pdf
 
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Ep35: PWS and Sibling Support

On 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 sibling is heard, how to validate their feelings, and be vulnerable, fairness and the difference between equality and equity, and why PWS parents should be talking honestly with their children. We want you all to know that you are not alone, that feeling inadequate or that you’re not getting it quite right, is absolutely normal and these moms can relate. We also want to know how we, as an organization and as parents, can better support siblings in our community. Please feel free to email Anne at  africke@pwsausa.org and let us know the kind of support you need or share with us your tips for supporting your sibling. 
Join our bi-weekly Pulse email newsletter at Join our Newsletter - Prader-Willi Syndrome Association | USA
 
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