PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999
submitted by Lisa Graziano, mom to Cameron (living with PWS) My husband and I attended our first PWSA | USA conference back in 1999 when it was held in conjunction with the Prader-Willi California Foundation, organized by Frank Moss (of PWCF) and Janalee Heinemann (of PWSA). Our son was just 6 months old and the...
PWS TEMPO Clinical Trial Webinar with Harmony Biosciences
Hear New Details About the TEMPO Clinical TrialTuesday, August 19, 2025 | 8:00 p.m. EST / 5:00 p.m. PSTHosted by PWSA | USA, Free Virtual Webinar via Zoom REGISTER HERE Join PWSA | USA and representatives from Harmony Biosciences in an upcoming free webinar to hear new information about the TEMPO PWS Clinical Trial. This...
Volunteer Spotlight: Melissa Rivas – Spreading Joy, Creativity, and Hope
Submitted by Carrie Ilijevich, PWSA | USA Marketing & Communications Director If you’ve been to a PWSA | USA event in the last few years, there’s a good chance you’ve seen (and maybe even posed in front of) something incredible that Melissa Rivas created. Melissa is not only an amazing mom to 7-year-old Sofia, who...
Ask Nurse Lynn: Leptin and Hyperphagia
Question: Male, 36 years old, Deletion It was suggested to me by a doctor (not a PWS specialist) that those with PWS are deficient in the hormone leptin, and that replacing it could be an alternative way of helping with hyperphagia. Have you heard of leptin supplement as a treatment for hyperphagia? Nurse Lynn’s Response:...
The Road to the Americans with Disabilities Act (ADA)
On Saturday, July 26, 2025, the Americans with Disabilities Act will celebrate 35 years! This anniversary celebrates a victory at least a century in the making, upon which advocates must continue to build. The road to this legislative act was long, but there were dedicated advocates who fought along the way to ensure individuals with...
Ask Nurse Lynn: Risks of GLP-1 Medications
Question: Female, 40 years old, unknown subtype My daughter’s GP, and she herself, want to try Mounjaro injections for 6 months. She will be closely monitored by her nurse, her GP, her care team and family. She currently does not appear to have issues with gastroparesis but I want to prevent them by changing her...
You’re Invited: Celebrate PWSA | USA’s 50th Anniversary at the Journey of Hope Gala
Here’s Your Next Opportunity to Gather Together In-Person with the PWS Community! Celebrate PWSA | USA’s 50th Anniversary in St. Louis, MO Learn More and Purchase Gala Tickets After experiencing an amazing time together in Phoenix at the United in Hope International PWS Conference, we’re reminded how meaningful it is to gather in person –...
Volunteer Spotlight: Pillar of Strength, Support, and Hope
submitted by Stacy Ward Sybil Cohen has been a dedicated volunteer for PWSA | USA for many years, serving in numerous vital roles including chapter leader, board member, and parent mentor. Her unwavering commitment was especially evident at the recent United in Hope Conference, where she volunteered at the registration and check-in desk for the...
Building Our Social Skills (BOSS) Program Begins Again
PWSA | USA is excited to announce the return of the Building Our Social Skills (BOSS) program this fall. We know how important social development is for individuals with Prader-Willi syndrome, and how challenging it can be. BOSS, funded by FPWR was created to provide a supportive, structured space for participants to build communication skills, boost confidence,...
Ask Nurse Lynn: Ocular Issues and Eye Patching
Question: Male, 15 months old, UPD subtype My son has esotropia and amblyopia primarily affecting his right eye but intermittently seen in his left eye as well. Surgical correction has been discussed and currently we have been instructed to patch his dominant eye (left) for two hours daily. We would like to pursue the interventions...
PWSA | USA Helps Usher in New Era of Rare Disease Research with Launch of Florida’s Sunshine Genetics Act
Florida has officially launched the Sunshine Genetics Act, a first-of-its-kind initiative offering free, voluntary whole genome sequencing (WGS) for all newborns—and PWSA | USA was honored to stand at the forefront of this historic moment for rare disease families. On July 9, 2025, leaders in science, medicine, and policy gathered at Florida State University’s Interdisciplinary...
Volunteer Spotlight: The Spirit of Compassion and Community Behind-the-Scenes
submitted by Stacy Ward This spotlight is in recognition of Diane Larsen, mom to Carrie Ilijevich (Director of Marketing/Communications at PWSA | USA.) Diane has volunteered countless hours for PWSA | USA’s convention in 2023 and the most recent United In Hope International PWS Conference. Although Diane has no personal connection to the Prader-Willi syndrome...
Together in Phoenix: A Look Back at the 2025 United in Hope International PWS Conference
We can’t overstate this enough – thank you. We are grateful to every family, individual, caregiver, professional, researcher, and supporter who took time out of your busy lives, traveled from near and far, and made the United in Hope International PWS Conference in Phoenix the most unforgettable gathering we’ve ever experienced. This was a historic...
Ask Nurse Lynn: Pain Management on Hospice Care
Question: Female, 60 years old, Unknown Subtype My sister is on hospice with cardiomyopathy. She has been prescribed morphine for pain, but it seems to be making it worse. She appears to be having symptoms of toxicity at a very low dose. She often reacts differently to medications and I’m wondering what we can give...
Conference Recap from a Grateful Mom and a Happy Daughter
submitted by Anne Fricke and her daughter, Freya (13, living with PWS) Before the conference last week, my daughter Freya had only met two other people with PWS in her life. One was when she was too little to remember. The other is a friend who lives 5 hours away and we see once or...
Ask Nurse Lynn: Aging in PWS and Life Spans
Question: Female, 31 years old, UPD subtype Do people with PWS age at an accelerated rate compared to those who do not have this syndrome? My 31 year old daughter was just diagnosed with arthritis in her knee. As I look back on her health history, I can see how many of her conditions are...
Navigating Summer Celebrations
Summer is here! This means different things to different families, often depending on the age of your loved one with PWS. This time may bring a mix of relief and worry, a freeing of the schedule and a burdening of supervision needs. While every family is different with their own unique needs during this time...
Ask Nurse Lynn: Supplement, Medication for Skin Picking
Question: Female, 61 years old, Deletion subtype Are there any proven drugs to help with skin picking? My daughter stopped skin picking when she was about 12 and in the past year, she has started again. She cannot seem to stop. I have talked to all of her doctors about it and no one seems...
Hippotherapy and PWS
Contributed by Melanie Zalman When my daughter was just a bit older than 2, someone on the Birth-Three Facebook group shared phenomenal photos of a visit they made to a horse barn with their family. Cut to a super sweet snapshot of their little hypotonic kiddo on a HUGE, majestic horse caught my attention. I...
PWSA | USA Advocacy Ambassadors Join Forces with Patients Rising on Capitol Hill
Six of our dedicated PWSA | USA Advocacy Ambassadors (Dorothea Lantz, Elaine Towle, Jessica Kempa, Sheri Mills, Michelle Torbert and Jennifer Garzia—also joined by her family, including her son Rocco who is 20 years old living with PWS) traveled to Washington, D.C. last week to take part in Patients Rising’s 4th annual “We the Patients”...
Ask Nurse Lynn: Weight, BMI, Blood Sugar Levels
Question: Male, 27 years old, Deletion subtype What would a critically hazardous weight be for someone with PWS that’s height is 4’11”? Also, what is considered a good range for their blood sugar levels in PWS with diabetes? Nurse Lynn’s Response: When caring for someone with PWS, it’s important to remember that body weight alone...
Adults with PWS Advisory Board Spotlight: Brooke Fuller
Brooke Fuller is 51 years old and lives with Prader-Willi syndrome. She lives in Michigan and has been a board member for PWSA | USA since the beginning. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members...
Ask Nurse Lynn: Understanding and Mitigating Potential Psychosis
Question: Female, 6 years old, UPD subtype We have seen a lot of information about PWS patients with UPD having a higher risk of developing psychosis typically by age 20. We have recently put our daughter into a mental health/behavioral therapy program where she will meet with a therapist once a month. This way as...
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.