PWS United

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

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

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

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

Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide

The 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
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
PWSA Memory: Vanja Holm's contribution to our knowledge of PWS - IPWSO
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome
Fundraisers
Zahra's Night of Light - Campaign
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Take Action: Help Pass the Sunshine Genetics Act in Florida! - Prader-Willi Syndrome Association | USA
Soleno Sibling/Family Member Stories: stories@soleno.life
Soleno Caregiver Photo & Story Release Form (for minor siblings) Feb 2025.docx
Soleno Adult Sibling Photo & Story Release Form Feb 2025.docx
Family Support
Staying Cool at Conference - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Respiratory Infections - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
Research
Tirzepatide Study: EndocrineResearch@seattlechildrens.org or 206-987-2540
PWSA | USA Webinar: About Harmony Biosciences TEMPO PWS Clinical
Announcements/Resource Spotlight
What is Early Intervention?

Ep33: 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 U.S. Department of Education, why it may be critical for our loved ones with PWS, what the alternative (ie voucher programs and private schools) may look like, and how and why to contact your representatives on this issue.Jamilah Bashir has over 20 years’ experience serving as a special education teacher, special education supervisor, and education consultant across charter, public, and private schools. She has two master’s degrees—one in Education and another in Educational Leadership—from St. Joseph’s University. She is the founder of The IEP Coach LLC, a company dedicated to empowering special education teachers, schools, and parents. Jamilah is a speaker and thought leader and has presented at conferences such as the 2024 Autism in Black Conference and spoken on podcasts like The Impact of Educational Leadership with Isaiah Drone and The Opportunity Gap by Understood.org. She is also the author of Because of H.E.R., a memoir about her experience of growing up with a sibling with a disability. She created resources and programs like the Master the IEP Course and SPEDucators Rise. Jamilah connects with over 7,000 people weekly through her live series The Coaching Corner with the IEP Coach on social media.
We want to extend a huge thank you to Jamilah for sharing her knowledge of the special education system and we hope this helps families better understand the current landscape of the Department of Education.
LINKS
Website: www.theiepcoachllc.com
Master the IEP Course: www.mastertheiep.com
SPEDucators Rise Coaching Program: https://www.theiepcoachllc.com/speducators-rise-program
Freebies: https://www.theiepcoachllc.com/freebies
Instagram: Jamilah F. Bashir (@theiepcoachllc) • Instagram photos and videos

Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications

The 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 your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Other Events
BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome
Fundraisers
Prader-Willi Hot Stove | Powered By GiveSmart
Zahra's Night of Light - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025 - Prader-Willi Syndrome Association | USA
Call to Action for Illinois Families: Witness Slip
Illinois General Assembly - Full Text of HR0173
Family Support
Her Own Home with Family Nearby - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Interventions for Rectal Picking - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
I Am Full – Stories for Jacob Book Club Discussion: dan_yashinsky@hotmail.com
Research
TREND Report: Gastrointestinal Issues in the PWS Community - Prader-Willi Syndrome Association | USA
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA
Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Call for Nominations or Board of Directors
mailto:sward@pwsausa.org
LisaGrazianoLMF​T@gmail.com
Community Publications - Prader-Willi Syndrome Association | USA

Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch

On 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 Kat Lucero, who has had success with online fundraising and is excited to help launch a brand-new in person fundraising campaign for PWS Awareness Month - "United We Brunch." And finally, Michele Hampton, a dedicated PWS mom shares her experience hosting the Dance Silly for Prader-Willi event.
Whether you’re looking for inspiration to start your own fundraiser or just want to hear some incredible stories of community support, this episode is for you.
Episode Links:
PWS Hope United Website: https://give.pwsausa.org/campaign/pwsa-fundraising-pages/c642678
United We Brunch Website: https://give.pwsausa.org/campaign/united-we-brunch/c664218
United We Brunch Toolkit: https://www.pwsausa.org/wp-content/uploads/2025/03/UNITED-WE-BRUNCH-TOOLKIT.pdf
Zahra's Night of Light Website: https://give.pwsausa.org/event/zahras-night-of-light/e640509
PWSA | USA's Events Page: https://www.pwsausa.org/events/
Dance Silly for Prader-Willi Event Page: https://www.pwsausa.org/events/dance-silly-for-prader-willi/
 

Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action

The 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
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: Donate to Diamonds & Denim 2025
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome
Fundraisers
Prader-Willi Hot Stove | Powered By GiveSmart
PWSA Fundraising Pages - Campaign
Spotlight on Hope
New Mexico teen receives national acclaim for Girl Scout Gold Award project - KOB.com
Share Your Story - Prader-Willi Syndrome Association | USA
Call to Action!
Call to Action: Save Our Clinical Trials - Prader-Willi Syndrome Association | USA
Advocacy
Aardvark Therapeutics Rings the Closing Bell | Nasdaq
Family Support
Celebrating National Caregivers Day 2025 - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
Research
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA
Twins & Prader-Willi Syndrome Survey
Announcements/Resource Spotlight
Call for Nominations or Board of Directors
mailto:sward@pwsausa.org
LisaGrazianoLMF​T@gmail.com
Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf

Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board

Introducing 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 explore where we’ve been, how far we’ve come, and recognize the pioneers who made it possible. With National Caregivers Day falling on February 21st, we’re kicking off the series with a look back at the formation and impact of the Professional Providers Advisory Board. Since 2008, this group has been instrumental in shaping best practices for residential care providers supporting individuals with Prader-Willi syndrome. Join us as we revisit the history and evolution of this essential advisory board with two special guests: Jeff Covington, a founding member of the board and former co-chair (2012-2014), and Stacy Ward, CEO of PWSA | USA. Together, they’ll share their insights on the challenges, milestones, and lasting impact of the board’s work in improving residential care and training for professional providers worldwide.Episode links:Original Pioneers in PWS blog article - https://www.pwsausa.org/pioneers-devoted-to-educating-and-supporting-residential-care-and-education-professionals/ Technology Supports: https://www.pwsausa.org/resources-a-z/technology-supports/ Best Practice Guidelines for Standard of Care in PWS: https://ipwso.org/wp-content/uploads/2020/10/PWS-Best_Practice_Guidelines.pdf   2025 International PWS Conference (Register to attend this year's Professional Providers Conference): https://pwsausaevents.cventevents.com/event/04353c7a-d6b1-45f9-9d6f-48acda9cd07e/home PWSA | USA's 2024 Residential Providers Conference Recap: https://www.pwsausa.org/residentialprovidersconference/