PWS United

October 16 and 17, 100 moms from the PWS community gathered in Park City, UT for our PWSA | USA Moms Retreat. It was a chance to step away, take a breath, and spend time with other moms who understand life with Prader-Willi Syndrome. Some moms got to hug old friends, and many made new ones. There was mindfulness, connection, journaling and art activities, delicious food, wine tasting, and time well spent around the fire, all with the beautiful back drop of the stunning Wasatch Mountains. This episode shares the voices of some of the moms who attended the retreat, what they enjoyed about it, and the supports they had in place to be there. We know that not everyone mom can step away for a few days at a time, but we hope this episode is a reminder on the importance of community and finding people who understand. Whether or not you attended retreat, you belong here.

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We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbee spoke in depth about the early years of Prader-Willi syndrome, hypotonia, and how physical therapy is a critical treatment. With over 30 years of experience, Janice was able to talk about physical therapy with PWS then and now, along with the truly beneficial addition of growth hormone. Abigail shares some of the newer strategies like dynamic movement intervention and Theratog suits. Both ladies offer an array of exercises and activities, along with stressing the importance of trunk support and physical therapy involving daily interactions and activities. This episode is an informative look at physical therapy throughout the PWS journey and full of practical activities families can, and should, do at home.

Learn more about PWS and physical therapy:

Therapeutic-interventions-1-1.pdf - Booklet by Janice Agarwal

Physical Therapy: The Basics - Prader-Willi Syndrome Association | USA

BIOS

Janice Agarwal, PT, cNDT, is the Co-Founder & Executive Director of Watch Us Farm. She is also a pediatric physical therapist with 40 years of experience. Janice led the Neurodevelopment Evaluation Team at Boston City Hospital and the Early Intervention Team at St. Mary’s Hospital for Children in New York and earned her Pediatric NeuroDevelopmental Training certification at the Bobath Center in London, England. Janice creates Behavioral and Sensory Integration plans for individuals and families nationally and internationally. She also has an adult son, Alex, with PWS.

Abigail Ogilbee holds a Doctorate of Physical Therapy degree with over 13 years of experience in pediatric physical therapy, focusing on children 0-5 years. She is certified in intermediate level DMI (Dynamic Movement Intervention), Theratog fittings, and electrical stimulation for infants and toddlers. Abigail now owns and operates Mat-Su Pediatric Physical Therapy in Wasilla Alaska.

Representative Adam Anderson joined the podcast to discuss newborn screening and the Florida Sunshine Genetics Act, Florida’s innovative voluntary research program using whole-genome sequencing as an additional newborn screening tool. The program, developed in collaboration with the Florida Institute for Pediatric Rare Diseases at Florida State University and other leading research and medical institutions, offers eligible Florida families the opportunity to screen their newborns for approximately 900 childhood-onset genetic conditions—many of which may benefit from earlier identification, intervention, monitoring, or treatment. Our Director of Community Engagement, Dorothea Lantz, who serves as Chair of the Sunshine Genetics Community Advisory Board and was involved as a rare disease advocate during the development of the Sunshine Genetics Act, spoke with Rep. Anderson about the personal story that led him into rare disease advocacy, the path from legislation to the creation of Sunshine Genetics and the Florida Institute for Pediatric Rare Diseases, and Florida’s growing investment in pediatric precision medicine. Their conversation explored the potential of genomic newborn screening to shorten the diagnostic journey for families, the importance of connecting families and pediatricians with genetic counselors and rare disease expertise, and how earlier identification of genetic conditions can help families access appropriate care and make more informed decisions about their child’s health.

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Successful and effective conversations on sexual health include discussions on intimacy, belonging, safety, friendships, consent, and so much more. These conversations may feel intimidating for parents and caregivers. We may not know how to begin, but evidence shows that these conversations are critical to helping keep our loved ones safe from sexual exploitation (especially our loved ones with Prader-Willi syndrome), while also helping them develop a framework for understanding and participating in healthy relationships with the level of intimacy they may desire. So how do we begin?

PWSA | USA CEO, Stacy Ward, sat down with Patrice Carroll, LICSW, Director of PWS Services at Latham Centers, and Lynn Garrick, Medical and Research Coordinator at PWSA | USA to offer guidance on navigating the topic of sexual health, the importance of consent, not just as a receiver but as a listener, experiencing rejection and disappointment, the use of social media, how belonging is a part of overall health, and ultimately, how does this affect quality of life.

Read Stacy's recent article on this subject at "Every Body": Sexual Health Belongs to Everyone - Prader-Willi Syndrome Association | USA

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PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode is a look back at the previous year of episodes (check out EP56: Celebrating One Year of Podcasting | PWS United for a look at the first year of episodes). From sibling advocacy, a personal look at single caregiving, and advice from PWS dads, to behavior and cognitive functioning, PWS research, rare pharmacies, and the inspiring world of PWS advocacy, this episode highlights the incredible work of families, caregivers, professionals, volunteers, and staff in seeking to improve the lives of and empower those living with Prader-Willi syndrome.

Links to episodes highlighted:

Ep60: Rockie Penta: Caregiver, Roommate, Best Friend | PWS United

Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success | PWS United

Ep67: Broken Systems, Enduring Love, Single Caregivers Series | PWS United

Ep75: Global PWS Registry 2.0 | PWS United

Ep84: Welcoming PWSA | USA's Equity Committee | PWS United

Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United

Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues | PWS United

Ep94 Advocacy is Everything: 2026 DC Fly-In Recap | PWS United

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

Ep101: Transitioning PWS to Adulthood | PWS United

PWSA | USA's Director of Community Development, Melanie Zalman, sat down with caregiver Shelley Smith to shine a light on the lasting impact of thoughtful planning, enduring love, and the legacy that one family can leave behind. We came to know Shelley through her role as caregiver to her cousin Karen (with PWS) who passed away in December of last year at the age of 68. We have begun to learn a story that spans decades of devotion, caregiving, advocacy, and planning by Karen's mom and dad, her extended family, and those who loved her the most. In this conversation, Shelley reflects on Karen's life, the commitment family made to ensuring she was cared for throughout her lifetime, and the legacy gift that will help support future generations of individuals with PWS and the people who love and care for them.

Resource Links:

Planned Giving | PWSA USA

Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA

This episode is a re-air from August of 2025 on the topic of planned giving and leaving a lasting legacy with PWSA. August is Make-a-Will Month, and we have some new resources, like our legacy tips, on the how and why of supporting the work of PWSA | USA through the avenue of planned giving. Thank you again to Tim Hearn, father to David (living with PWS) for an insightful and inspiring conversation on leaving a lasting legacy.

Planned Giving | PWSA USA

Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA

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The PWS Roadshow is a series of events throughout the Pacific Northwest, put on by the Washington/Oregon chapter of PWSA and sponsored by Soleno Therapeutics, the makers of VYKAT XR, the only FDA-approved treatment for hyperphagia. It is an opportunity to meet local PWS families, ask experts and connect with PWS professionals in the area, learn about new and potential treatments for hyperphagia, and connect with Soleno PACE for product support and resources.

As Vonnie Sheadel, chapter president, host of the PWS roadshow, and mom to Bill (46, living with PWS) wrote:

“Because PWS is rare, families frequently face isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards—including connecting with individuals and families who may have been missed by traditional outreach in the past.”

In this episode you’ll hear from Vonnie herself, Cainan (adult living with PWS), and his mom Heather, PWS parents Joseph and Erin, and PWS United's co-host Anne and her daughter Freya (living with PWS), all talking about the Medford PWS Roadshow, along with the value and importance of creating and attending events like these.

PWS Link Map | Mysite

Events | PWSA-OR-WA.ORG

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

24 Hour Crisis Line: 941-312-0400

Join our Newsletter - Prader-Willi Syndrome Association | USA

Pulse Header

The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA

What Does Disability Pride Month Mean to Me? - Prader-Willi Syndrome Association | USA

Spotlight on PWS

Share Your Story - Prader-Willi Syndrome Association | USA

Resource Spotlight

Medical-Reference-Guide-for-Parents-Rebranded-2022.pdf

Events | Fundraisers

Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign

Residential Providers Conference - Prader-Willi Syndrome Association | USA

PWS Community Day Registration (Los Angeles) Survey

PWS Community Day Registration (San Franscisco Bay Area) Survey

PWSA Events

Podcast

Ep101: Transitioning PWS to Adulthood | PWS United

Advocacy

Meet Our Equity Committee: Ashish Rishi - Prader-Willi Syndrome Association | USA

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

Family Support

Why We Gather - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Deconditioning After Hospital Stay - Prader-Willi Syndrome Association | USA

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

Research

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

PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA

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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 visithttp://www.vykatxr.com for information on use and potential side effects.

PWS Moms, Jen Garzia (mom to Rocco, 22), Denise Servais (mom to Maya, 22), and Elaine Towle (mom to James, 40) share the challenges, successes, and timelines of helping their loved one transition into adulthood. Guardianship, social security benefits, day programs, and medical care are the focus of this conversation. But the thread through it all is the call for adaptability. How to shift gears, perspectives, and expectations when one solution isn’t a good fit. What it looks like when, after twenty years of following the plot line, you realize the systems in place do not comply.

As PWS mom Jen Garzia says in this episode, “the systems aren’t as advanced as our kids have become.” This is not an episode on the frustrations and grief of broken and archaic systems, of a society still learning how to care for its more vulnerable members, but one of versatility, steadfastness, and the wisdom, creativity, and effectiveness of adapting.

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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

(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: https://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

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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 visithttp://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

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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

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Music: https://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 visithttp://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
Saturday, September 19, 2026 | Heritage Hills Golf Course, Lakeville, MA
Learn more and register at: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873

Clint Hurdle Hot Stove Dinner
Save the Date! Saturday, March 20, 2027 | Bradenton, FL
Registration details coming soon at pwsausa.org.

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

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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 visithttp://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

http://www.pwsausa.org/

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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: 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)

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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 visithttp://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

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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.

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