PWS United

Ep60: Rockie Penta: Caregiver, Roommate, Best Friend

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!

Ep59 Pulse 131: Virtual Gala Auction, Care Until Cure, Give Kids a Chance Act, NICU and Newborns

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, WashingtonSeattle Children's HospitalContact: Isabella Niu, MD / Stephanie PurdyPhone: (206) 987-2640Email: stephanie.purdy@seattlechildrens.org
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
Intro Music: https://www.bensound.com/  License certificate #2242442 

EP58: Recognizing the Unsung Heroes of PWS

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

Ep57 Pulse 130: Direct Support Professionals Week, DUR Written Testimony, Recursos en Español

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
KKrukowski1@thechicagoschool.edu
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, FloridaUF Shands Childrens HospitalContact: Jennifer Miller, MDPhone: (352) 294-8229Email: millejl@peds.ufl.edu
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.
Intro Music: https://www.bensound.com/  License certificate #2242442 

EP56: Celebrating One Year of Podcasting

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 pwsunitedpodcast@gmail.com or communications@pwsausa.org 
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 

EP55: Hope, Perseverance, and Soleno's Path to an FDA-Approval for Prader-Willi Syndrome

How does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment? 
 
On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi syndrome 4 years of age and older. Anish, Kristen, and Dorothea discuss the unique obstacles they faced along the way to FDA approval and how the company and our PWS community overcame those hurdles. They also discuss the importance of advocacy in obtaining FDA-approved treatments, the experience of finally receiving approval after a long journey, and how Soleno is ensuring access and affordability to VYKAT XR, while also helping families educate and engage with their medical professionals. 
 
What are Anish and Kristen’s messages of hope for the PWS community? Listen to this episode of PWS United to find out. 
 
Links:
 
https://www.vykatxr.com/
 

Ep55 (Bonus Episode!): Leave a Lasting Legacy with PWSA | USA

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 development@pwsausa.org.
 
Intro Music: https://www.bensound.com/; License certificate #2242442 
 

EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPs

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, MinnesotaUniversity of Minnesota Masonic Childrens HospitalContact: Bradley Miller, MDPhone: (612) 624-5409Email: mille685@umn.edu
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
 
Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep53: Empowering Families with Dr. Destiny Pacha, Parent Submissions

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

Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences Webinar

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  
24 Hour Crisis Line: 941-312-0400 
Make-A-Will Month 
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 
PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - 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 
Fundraisers 
2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA 
Contact email: mhampton0933@gmail.com
16th Annual Hunter Lens Golf Tournament - Prader-Willi Syndrome Association | USA
PWSA Fundraising Pages - Campaign 
Spotlight on Hope 
Volunteer Spotlight: Melissa Rivas - Spreading Joy, Creativity, and Hope - Prader-Willi Syndrome Association | USA 
Share Your Story - Prader-Willi Syndrome Association | USA 
Advocacy 
Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research
Medicaid-Fact-Sheet-1.pdf 
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA 
Family Support 
Understanding Gastric Motility and Gastroparesis in PWS - Prader-Willi Syndrome Association | USA 
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA  
Ask Nurse Lynn: Leptin and Hyperphagia
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 
www.heroforpws.com 
Announcements/Resource Spotlight 
Qualifying for Social Security Disability with PWS 
 
Intro Music: https://www.bensound.com/; License certificate #2242442