PWS United

Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha

This episode is loaded with important information for your school-aged loved one with PWS. Destiny Pacha, PWS education specialist and IEP consultant, gathered questions from parents and caregivers in the community about many aspects of the school experience. Topics covered include progress reports, how to re-evaluate and advocate for necessary supports, what are the non-negotiables, when to discuss extended school year (ESY) options, staff trainings, transitioning to a new classroom, school, or from summer break, addressing food security in the classroom, and more. Be sure to keep this podcast in your library as you will likely want to refer back to it again and again! 
Be sure to check out the many valuable resource links below. 
Questions for Dr. Pacha
Empowered Solutions
EmpowerED Solutions (@empowered_solutions_) • Instagram photos and videos
Family Support Webinar: Everything You Need to Know About Extended School Year
It Starts With Hello: Katie's Story About Prader-Willi Syndrome | Book Reading with Author Dr. Pacha
Family Support Webinar: Creating an Individualized Health Plan
Family Support: Social Stories - Prader-Willi Syndrome Association | USA
Resources A-Z: Cards - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
Caribe Royale Resort | Resort in Orlando Florida | Official Site
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
How To Travel with Refrigerated Medication - PWSA USA
Events | Fundraisers
Mom’s Hike: 2026 Event Series
pwshikingmom@gmail.com
Home - DADventure Retreat
PWSA Events
Podcast
Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United
Advocacy
Advocacy & Awareness - Prader-Willi Syndrome Association | USA
Family Support
Appreciation for Fathers and How They Show Up for PWS - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Anesthesia and Steroids - 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
PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
Announcements
PWSA | USA Board of Directors Member Spotlight: John Lens - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission

Father's Day is almost here (June 21), and we're celebrating with two incredible dads from the PWS community. PWSA | USA's Director of Development Melanie Zalman and Fundraising Coach Katie Martinez sat down with John Lens, dad to Hunter, and Clint Hurdle, dad to Maddie. Both are proud fathers, PWSA | USA Board of Directors members, and longtime champions of the PWS community.
For over a decade, John and Clint have each hosted annual fundraising events to benefit PWSA | USA: The Hunter Lens Golf Tournament and the Clint Hurdle Hot Stove Dinner. In this heartfelt conversation, they open up about their families, their loved ones' journeys with PWS, and what keeps them coming back year after year to give back to the broader PWS community. They also share personal reflections on fatherhood and offer advice for others walking a similar path.
To all the dads in our PWS community, Happy Father's Day!
Hunter Lens Golf TournamentSaturday, September 19, 2026 | Heritage Hills Golf Course, Lakeville, MALearn more and register at: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873
Clint Hurdle Hot Stove DinnerSave the Date! Saturday, March 20, 2027 | Bradenton, FLRegistration details coming soon at pwsausa.org.

Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
Enjoy Summer with this List of Fun Activities! - Prader-Willi Syndrome Association | USA
Navigating Summer Celebrations - Prader-Willi Syndrome Association | USA
Staying Safe in the Heat - Prader-Willi Syndrome Association | USA
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
TREND Connect
Events | Fundraisers
Dancing Through the Decades - Campaign
Donate to Hummus & Watermelon: United We Brunch for PWS
PWSA Events
Podcast
Ep95 Garrick Siblings: Importance of Community and Listening | PWS United
Advocacy
Local Moms Show Support for Prader-Willi Syndrome Awareness Day
Finding the Funny
Prader Silly: A Night of Rare Laughs - Campaign
D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA
Family Support
Awareness Month Success: Thank you, PWS Community! - Prader-Willi Syndrome Association | USA
Medical Stories - Prader-Willi Syndrome (PWS): Ayoni's Story
Ask Nurse Lynn: NG Tube or G Tube - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Home - Global Prader-Willi Syndrome Registry
The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life
PRETEND Program for Preschoolers Eligibility Form
PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
Announcements
2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

Ep95 Garrick Siblings: Importance of Community and Listening

We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support. 
This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. She spoke with Hannah and Alex Garrick, siblings to John (20, living with PWS). They share a bit about their lives growing up with a sibling with PWS; the neighborhood watch, food security, and how it led them into the careers they have now.  Hannah and Alex are open about the aggression they experienced from their brother and how food security was difficult, but also share the love they feel for John, the lessons they have gained from their experiences with him, and the relief and happiness that he is doing so well in his current situation. They talk about the importance of listening, both siblings to their loved one with PWS and parents to the sibling, community involvement for the individual with PWS, and how their family has approached the conversation of guardianship.
Learn more about Prader-Willi syndrome and PWSA | USA at
www.pwsausa.org
 
Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep94 Advocacy is Everything: 2026 DC Fly-In Recap

PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and seeing old friends, it was a busy, but nourishing, few days. The communications team at PWSA | USA spoke with several attendees at the fly-in to hear their thoughts on what they want their representatives to take home from these meetings, moments that stood out to them, and how to describe PWS advocacy with one word. 
Resources:
2026-Hill-Day-Ask-Document-RDIH.pdf
FDA Rare Disease Innovation Hub | FDA
2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf
2026-Hill-Day-Ask-Document-KASSA.pdf
Facebook
Voices That Move Policy: Recapping PWSA | USA's 2026 D.C. Fly-In - Prader-Willi Syndrome Association | USA
Can't Make It to D.C.? Here's How to Advocate From Home During PWSA | USA's 2026 Fly-In - Prader-Willi Syndrome Association | USA

Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
 
Pulse Header 
The Importance of PWS Awareness Day - PWSA | USA Blog
Resource Spotlight 
Share Your Spotlight on PWS
PWS Awareness Month 
Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE
PWS Awareness Month Hub
Events | Fundraisers 
View All Upcoming PWS Community Events
Soleno Therapeutics PWS Community Day in New Jersey
United in Action - PWS Awareness Month Campaign
Podcast 
Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues
Advocacy 
A full recap of PWSA | USA's 2026 D.C. Fly-In is coming soon!
Colors of Hope Webinar - Advocating as a Person of Color in the Rare Disease Space (May 28 | 8 PM ET)
RSVP to: bipocpws@gmail.com
Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation - PWSA | USA Blog
Calling Kansas PWS Families - PWSA | USA Blog
Family Support 
PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog
More PWS Roadshow Events
Ask Nurse Lynn: Recurring Urinary Tract Infections (UTI) - PWSA | USA Blog
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA  
Research 
Aardvark Therapeutics Plans to Unblind HERO and OLE Data to Inform Path Forward Following FDA Clinical Hold
Free CME! The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life
PRETEND Play Intervention Study for Ages 3-7: Eligibility Form
For questions, email: neurodevelopmen​tresearchlab@gm​ail.com
PWS Clinician Information Collection Form
PWSA | USA Announcements
2027 United in Hope National PWS Convention Scholarship Applications (Due by June 1, 2026)
 
Intro Music: https://www.bensound.com/  License certificate #2242442  
Music: www.purple-planet.com 
Disclaimer for show notes:  
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects. 

Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues

For this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator, mom to John (living with PWS, and the woman behind Ask Nurse Lynn to talk about behavior and psychiatric issues. We learn some important behavioral tips, the importance of consistency, the signs of when it might be time to intervene with medication, how disordered sleep affects behavior, and more. 
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
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com

Ep91 PWS Awareness Month is Here: How to Get Involved

Another PWS Awareness Month (May 1-31) has arrived and we're excited to continue spreading awareness, information, and support for our loved ones with PWS! In this episode, PWSA | USA's Communications, Advocacy, and Development teams share ways to get involved during PWS Awareness Month - from everyday awareness actions to fundraisers, advocacy efforts and the D.C. Fly-In.
Throughout May, be sure to join our social media platforms on Facebook and Instagram so you can share our daily PWS facts for this month. Get your PWS gear to rep awareness, create a fundraising page or event, file a Proclamation Day request using our Proclamation Toolkit, speak at your child's school, share resources with their group home, tell a coworker about our PWS United podcast, or take a friend out for coffee to tell them about your loved one. No action is too small!
Use the links below to check out all of the awareness month resources on our resource hub webpage or read our detailed blog on the many different actions you can take this month. 
No matter how you spread awareness, your work to share the realities of PWS are appreciated. We're here to support you and your loved one with PWS. Happy PWS Awareness Month!
 
Get in touch with us:
communications@pwsausa.org
Advocacy@pwsausa.org
development@pwsausa.org
info@pwsausa.org
 
Helpful links:
PWS Awareness Month Hub
PWSA | USA on Facebook
PWSA | USA on Instagram
United in Action - Click Here to Take Action!
3rd D.C. Fly-In - Click Here to Find our Legislative Ask Documents
Find Your Legislator Locator Website
Advocacy & Awareness Webpage
 
PWSA | USA is available for the PWS community 24-hours a day, 365 days a year. If and when you need support, please reach out to us. You can call us at (941) 312-0400 or email info@pwsausa.org. We are here for you every step of the PWS journey.
 
Intro Music: https://www.bensound.com/  License certificate #2242442  
Music: www.purple-planet.com 

Ep90 Staying Curious: Continuing the Equity Conversation

Today’s episode features two more members of our new equity committee, Wordna Meskheniten and Dhivya Venkataraman, along with PWSA CEO Stacy Ward, PWSA Board Member and PWS mom, Dini Rao, and Marketing and Communications Coordinator and PWS mom Anne Fricke. Wordna and Dhivya bring thoughtful insight, experience, and an impressive array of education and work experience to this conversation on how people’s identifiers, on top of a diagnosis of Prader-Willi syndrome, may affect their experiences in the school setting and beyond.
This episode touches on the ideas of equity journeys, equity as an everyday practice, the dehumanization of specific identities and how privilege plays a role in that. PWS does not recognize barriers of biological sex, race, gender identity, ethnicity, sexual orientation, income level, faith, or where in the world someone is born. It is found in every community. The power we have to enact change, to advocate for better services, to demand treatment options, is in the community that we have and that we create, and that community includes everyone touched by PWS.
Sometimes people may fear that they will lose something in the implementation of equity initiatives -- that somehow, by opening the circle, they will be pushed out. But circles can continue to grow. Promoting and supporting equity initiatives does not take away from people, does not exclude people, it opens up the circle and invites more people in.
So we invite you into this conversation, ask you to stay curious, and join us as we explore equity and PWS.