PWS United

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action: Carol's Story PWSA Memory 1997_Vol-XXII-N4-Sept-1997.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause Thank You Message PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea's Journey with PWS - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Podcast Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United Advocacy A Milestone for Hope: U.S. House Passes the Give Kids a Chance Act - Prader-Willi Syndrome Association | USA Family Support Reflections from PWSA | USA’s Visit to PANTHERx Rare Pharmacy - Prader-Willi Syndrome Association | USA Adoption Spotlight for Santino, contact: eschmitt@chomepgh.org or 412-441-4484 Ask Nurse Lynn: Testosterone and Low LH - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research HERO Study for Treatment of Hyperphagia in PWS PWS-PARTICIPANTS-NEEDED.pdf Flyer for adult with PWS relationship study Pre-screening Survey for adults with PWS for relationship study New Research Study Seeks Caregiver Insights on Hyperphagia in PWS - Prader-Willi Syndrome Association | USA    Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp Screening Questionnaire for the Study Titled: The Effects of a Caregiver-Implemented Power Card Strategy on Social Play Skills in Children with Prader-Willi Syndrome | QuestionPro Survey Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442 

Welcome to another episode in our podcast series, Sibling Advocacy, where we speak 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, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, an almost 20-year-old living with PWS. Joe talks about growing up with PWS in the house, what inclusion looks like for Gavin, the need for opportunities for adults, and offers some advice for other siblings on this journey. In 2022, as part of raising funds and awareness, Joe ran the Boston Marathon.  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! Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442   

The latest in PWSA | USA events and PWS news in advocacy, family support, and research. 24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays. Preparing for the Holidays Blogs/Resources: Celebrate Thanksgiving Safely Tips and Techniques for a Safe Holiday Season Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs A Letter to Friends and Family PWSA Memory: September 1997 edition of The Gathered View Spotlight on Hope: Share your submission! 2025 Angel Drive Campaign: Click Here to Make an Impact Hope in Action Video - Shaping the Future of PWS Save the Date: Giving Tuesday is Tuesday, December 2, 2025 - DOUBLE your impact when you give to the Angel Drive on that date! PWS Christmas Experience near PDX: Email pwsaorwa@gmail.com by December 3, 2025 to RSVP. Prader Silly: Event Photo Gallery (Photo credit: Taylor Brown | @word.doc_brown) Claus for a Cause: Register for Claus for a Cause Bid on Claus for a Cause Silent Auction Items Donate to Claus for a Cause D.C. Fly-In - Applications for the 2026 D.C. Fly-In will open soon! For questions, email advocacy@pwsausa.org. To sponsor this event, email development@pwsausa.org. Operation Holiday Cheer Click Here to Submit an Application Deadline to submit an application is Monday, December 1, 2025. Email info@pwsausa.org with any questions. Prader-Willi Syndrome and Diabetes Click Here to Read the Blog Article ¡Anuncio! Nuevo Grupo de Apoyo en Español Únete Aquí Ask Nurse Lynn PWS and Aging Response Article Submit Your Own Non-Emergency Question about PWS TREND Community and PWS Connect on Discord Click Here to Learn More Join the conversation today! Interested? Email interested@tren​d.community and we’ll send you a private link to join PWS Connect on Discord! Research Spotlight Harmony Biosciences TEMPO PWS Clinical Trial PWSA | USA Resource Spotlight Central Adrenal Insufficiency Screening with Morning Plasma Cortisol and ACTH Levels in Prader-Willi syndrome Intro Music: https://www.bensound.com/  License certificate #2242442   

Carrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS. This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is an important and beautiful episode, for its rawness, the vulnerability and willingness of the parents to share their stories, and the reality of the challenges they face when it comes to employment, relationships, obtaining services, and mental health which Annie says is, “the hidden casualty of my life.” Please listen with care: If you are caregivers for young individuals with PWS, this episode is likely not for you. It is important to remember that PWS affects each family differently and that the landscape of treatments and services continues to change. For more information on Prader-Willi syndrome, please visit www.pwsausa.org 24 Hour Crisis Line: 941-312-0400 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 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy PWSA Memory 1993_Vol-XVII-N5-Sept-Oct-1993.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: The Story of George - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Calling Iowa PWS Families for P&T Committee - Prader-Willi Syndrome Association | USA Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA Understanding P&T Committees and DUR Boards - Prader-Willi Syndrome Association | USA Wisconsin Families: We Need Your Voice to Support SB 203 - Prader-Willi Syndrome Association | USA Family Support Operation Holiday Cheer Returns to Support PWS Families in 2025 - Prader-Willi Syndrome Association | USA Respite & Relationship: PWS Moms’ Hiking Weekends - Prader-Willi Syndrome Association | USA Community Collectives: Creating Support for Caregivers - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Preventing and Treating Constipation - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research 2025_11_03_Whats-TRENDing-Community-Themes-and-PWS.pdf TREND Community - Prader-Willi Syndrome Association | USA Aardvark Therapeutics' HERO Clinical Trial Informational Webinar - October 15, 2025 Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight Strategies, Interventions, and Routines for the Prevention or Mitigation of Skin Picking in Individuals with Prader-Willi Syndrome   Intro Music: https://www.bensound.com/  License certificate #2242442 

On today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being  a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care for your loved one so you may find a piece of yourself again, or simply finding time for a much-needed nap. They also talk about how and why to give yourself grace, adapting the in-home culture to fit the needs of the family and having pride in what is created. This episode is the first of our mini-series focusing on single caregivers, and it’s a beautiful, insightful look into a few of the many ways families are formed.   Links: Libby - Welcome Love Is a Family book by Roma Downey Love Is a Family: Downey, Roma: 9780060393748: Amazon.com: Books

The next episode in our 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 Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS).  Henry is an insightful 14-year-old who refers to him and his sister as the "dynamic duo". He shares his perspective on PWS, how it affects the whole family, and how misinformation isn't a problem when the issue is actually a lack of information. Henry also shares candidly what it was like to advocate for Josie in a political arena, attending therapy appointments with her when he was younger, his thoughts about the future, and more.  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! Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442 

Ep63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Prader-Silly Live Auction Prader Silly: A Night of Rare Laughs PWSA Memory 2001_Vol-26-N5.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Golf | The RMC Foundation PWSA Fundraising Pages - Campaign Spotlight on Hope A Halloween Party with Heart: Dancing Silly for Prader-Willi - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Cuts to Department of Education Affect Individuals with PWS – Call to Action! - Prader-Willi Syndrome Association | USA Dr. Destiny Pacha on Instagram: Dr. Destiny Pacha (@_empowered_solutions) • Instagram photos and videos Dr. Destiny Pacha on Facebook: EmpowerED Solutions | Facebook Family Support PWS Families Gather in Egypt for Nile Hope Workshop and Camp - Prader-Willi Syndrome Association | USA PWS-Community-Day-Invite.pdf PWS Community Day Survey Ask Nurse Lynn: New Forgetfulness and Neurological/Psychological Concerns - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Enrolling now VNS4PWS Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight Dental-Health-in-Children-and-Adults-with-PWS.pdf   Intro Music: https://www.bensound.com/  License certificate #2242442   

Link to session material: Emotional Regulation Strategies This episode is from a session from our International United in Hope PWS Conference and was recorded on June 28, 2025. ”Teaching Emotional Regulation in Individuals with Prader-Willi Syndrome: ABA Strategies for Lasting Success,” was presented by Kasey Bedard, PhD, BCBA-D assistant professor at The Chicago School. Kasey discusses why emotional regulation is challenging for people with PWS, why tantrums occur, self-regulation vs co-regulation, how to teach emotional regulation skills, and more.  This episode is another great resource for families and caregivers of individuals living with Prader-Willi syndrome. To learn more about PWS please visit www.pwsausa.org.  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 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 Intro Music: https://www.bensound.com/  License certificate #2242442 

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 Seattle Children's Hospital Contact: Isabella Niu, MD / Stephanie Purdy Phone: (206) 987-2640 Email: 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 

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 

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, Florida UF Shands Childrens Hospital Contact: Jennifer Miller, MD Phone: (352) 294-8229 Email: 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 

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 

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/

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   

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 University of Minnesota Masonic Childrens Hospital Contact: Bradley Miller, MD Phone: (612) 624-5409 Email: 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 

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 

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