PWS United

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 

24 Hour Crisis Line: 941-312-0400

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2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA

Caribe Royale Resort | Resort in Orlando Florida | Official Site

(7) Facebook Live | Facebook

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Understanding Constipation in Prader-Willi Syndrome

Events | Fundraisers

PWS Community Day Registration (Los Angeles) Survey

PWS Community Day Registration (San Franscisco Bay Area) Survey

PWS Roadshow Heading to Spokane, Washington, July 11: Summer Tour Breaks Isolation and Builds 'Instant Villages' Across the Northwest - Prader-Willi Syndrome Association | USA

PWSA Events

Podcast

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

Advocacy

Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA

Access to Services for Individuals with PWS in Georgia Survey

Family Support

Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA

Prader-Willi Syndrome Association of Minnesota | PWSA-MN

Ask Nurse Lynn: Supporting a Long Life with PWS - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx

TREND Community: Shedding Light on PWS and Sleep - Understanding Cataplexy

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.

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 

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

[email protected]

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.

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 Tournament

Clint Hurdle Hot Stove Dinner

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.

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 

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

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: [email protected]

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. 

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

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:

[email protected]

[email protected]

[email protected]

[email protected]

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 [email protected]. 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