PWS United

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

24 Hour Crisis Line: 941-312-0400

Gala

Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA - Prader-Willi Syndrome Association | USA

Tribute Video: Celebrating 50 Years of PWSA | USA!

PWSA | USA's Journey of Hope Gala Photo Gallery

PWSA Memory

1987_Vol-XIII-N4-Jul-Aug-1987.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events | Fundraisers

2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Calling Missouri PWS Families! - Prader-Willi Syndrome Association | USA

Calling Indiana PWS Families! - Prader-Willi Syndrome Association | USA

Understanding P&T Committees and DUR Boards - Prader-Willi Syndrome Association | USA

Family Support

Intervening with a Bully, One Family’s Experience - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Stretch Marks with Estradiol - Prader-Willi Syndrome Association | USA

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

Research

TREND Community - Prader-Willi Syndrome Association | USA

2025-Whats-TRENDing-Birth-Stories-and-PWS.pdf

Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met - Prader-Willi Syndrome Association | USA

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

www.heroforpws.com

HERO Informational Webinar Registration: Webinar Registration - Zoom

HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE) - Prader-Willi Syndrome Association | USA

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Therapeutic-Interventions-2011.pdf

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We are beginning a new podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. 

Today's episode, led by Elaine Towle, PWSA | USA Advocacy Specialist and mom to Jim (39, living with PWS), is with Rockie Penta. Rockie is the younger sibling of Victor Penta, a man well-known in the PWS community. Victor is on PWSA | USA's Adults with PWS Advisory Board and has traveled to DC to advocate for the PWS community. 

Rockie shares how she speaks up for Victor when needed, sharing time with her parents to avoid burn out, how she navigated PWS growing up and what it looks like now to have him as a roommate and live-in uncle to her children. Spoiler alert, it seems to be going well!

With a diagnosis as challenging as PWS can be, we hope families will find this episode, and this series, refreshing and insightful. Thank you to all the siblings advocating and showing up for their loved one with PWS!

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

24 Hour Crisis Line: 941-312-0400

Gala Live Auction

PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION

50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf

PWSA Memory

1982_Vol-VIII-N5-Sept-Oct-1982.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

PWSA | USA's 50th Anniversary: Journey of Hope Gala - Campaign

Fundraisers

2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA

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

Answers for Audrey - Campaign

Prader-Silly: A Night of Rare Laughs - Prader-Willi Syndrome Association | USA

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Rising Star in the PWS Community and Beyond - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

2024-Rare-Roadmap_Rare-Research.pdf

Global PWS Registry - Prader-Willi Syndrome Association | USA

TREND Community - Prader-Willi Syndrome Association | USA

Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA

Family Support

Adults with PWS: Living a Happy, Healthy Life - Prader-Willi Syndrome Association | USA

C15 Foundation – Where Unlimited Potential Can Grow and Thrive

Affecting Sleep with PWS - Prader-Willi Syndrome Association | USA

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

Research

Parent perceptions of genetic diagnosis in the inpatient setting in the neonatal intensive care unit (NICU), pediatric intensive care unit (PICU), and cardiac care unit (CCU)

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

Seattle, Washington

www.heroforpws.com

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

NICU-Booklet-Rebranded-2022.pdf

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Direct Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day.

This week our CEO, Stacy Ward, sat down with three DSPs from the community to discuss what it is like working with individuals with PWS, how these individuals affect their lives, advice they have for DSPs coming into the community, and more. DSP Week comes every September, but we encourage our families to celebrate and appreciate their DSPs throughout the year. Thank you, DSPs! 

Read more about Direct Support Professionals Week at In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA

Learn more about Prader-Willi syndrome at www.pwsausa.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

Direct Support Professionals Week

In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA

PWSA Memory

The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndrome Association | USA

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign

Hotel Options: Where Can We Take You? | Endless Experiences & Top Locations | Marriott Bonvoy

Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD - Prader-Willi Syndrome Association | USA

Journey of Hope Gala Honoree Spotlight: Janalee Heinemann - Prader-Willi Syndrome Association | USA

Fundraisers

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

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

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

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

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

Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA

Family Support

Grandparent Perspectives - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Glucose Monitoring - Prader-Willi Syndrome Association | USA

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

Research

VYKAT XR FAQ for Parents

Social Skills in Children with Prader-Willi Syndrome: A Survey of Caregivers | QuestionPro Survey

[email protected]

Harmony Biosciences TEMPO Trial Webinar Recording: Harmony Biosciences TEMPO PWS Study Webinar

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

Gainesville, Florida

www.heroforpws.com

Recursos in Espanol:

"Hoja de información del estudio clínico HERO"

"El ensayo HERO" 

una folleto "Estudio HERO"

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

Sleep Summit - Prader-Willi Syndrome Association | USA 

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.

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PWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire new listeners to take advantage of this incredible resource for the PWS community. Share this podcast with a friend or family member to help spread PWS awareness.

Submit your podcast topic idea to [email protected] or [email protected] 

Are you a single parent and caregiver willing to talk with others on the podcast about your experiences? Please send an email to one of the above emails. 

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. 

Intro Music: https://www.bensound.com/  License certificate #2242442 

August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community.

Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s Board of Directors and dad to David. Together, they talk about the power of planned giving and why sustainability matters for an organization that families rely on for support, guidance, and advocacy.

For caregivers, planning ahead brings peace of mind, knowing that loved ones will have the support and security they need throughout their lives. A bequest through your will or trust is a deeply meaningful way to make a lasting impact, ensuring that PWSA can continue its vital programs and services today, tomorrow, and for generations to come.

As we look back on five decades of progress and ahead to a hopeful future, we invite you to learn more about legacy giving and consider joining the families who’ve already made this commitment to sustaining PWSA’s mission.

Important links:

PWSA | USA 50th Journey of Hope Gala

PWSA | USA's Make and Impact Website

PWSA | USA's Planned Giving Webpage

For questions, email [email protected].

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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

Planned Giving

Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA

Planned Giving | PWSA USA

PWSA Memory

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign

Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD - Prader-Willi Syndrome Association | USA

Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD - Prader-Willi Syndrome Association | USA

Aaron Weber Stand-Up: Having a Newborn, Urgent Care | The Tonight Show Starring Jimmy Fallon

Fundraisers

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

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Michigan PWS Families - Your Voices are Needed! - Prader-Willi Syndrome Association | USA

Federal Budget Proposals Could Undermine Critical Supports for Students with Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA

PWS Advocates Participate in Rare Across America Congressional Meetings - Prader-Willi Syndrome Association | USA

Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA

Family Support

The Importance of Caring for your Relationship - Prader-Willi Syndrome Association | USA

Empowering PWS Families in IEP Meetings – Registration for Parent Training

Ask Nurse Lynn: Bowel Blockage, Edema, and Hospital Stay - Prader-Willi Syndrome Association | USA

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

Research

Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA

Minneapolis, Minnesota

www.heroforpws.com

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications

Announcements/Resource Spotlight

School Success Summit - Prader-Willi Syndrome Association | USA

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On today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.

Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her discussion time with caregivers. She created a form for people to submit questions and then came onto the podcast to share those responses with our community. Topics included why or why not to disclose a PWS diagnosis, service requirements in relation to public vs private schools, the differences between modifications and accommodations in an IEP, special diplomas, how to know if an IEP is being implemented, the differences between language therapy and speech therapy, and more. This discussion is a wealth of information for anyone with a child with PWS in school. Listen to this episode to learn more about IEP and school support, along with an upcoming training for parents from Dr. Pacha, “Empowering PWS Families in IEP Meetings.”

LINKS

Empowering PWS Families in IEP Meetings training registration: https://docs.google.com/forms/d/e/1FAIpQLSdv4Y73t_n-xjOr2QHH5J4pcvyaqGqaKB2dTqORemXzPnHZCA/viewform

Dr. Pacha’s website: https://www.empoweredsolutions.org/

Instagram: https://www.instagram.com/_empowered_solutions/

Facebook: https://www.facebook.com/empowerededucationsolutions

Sign up for our Pulse Newsletter and stay informed at: https://www.pwsausa.org/join-newsletter/

PWSA | USA Instagram: https://www.instagram.com/pwsausa/

PWSA | USA Facebook: https://www.facebook.com/PWSAUSA

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