submitted by Sammi Hatfield Cam is our 10-year-old son adopted from China at 26 months. Cam’s story of survival is amazing, from being given up on by an orphanage unable to meet his needs to being fostered by an American couple working in China at 7 months old until we could bring him home 15...
TREND Pulse Report: PWS and Emotional and Behavioral Patterns
TREND Community released its latest report on PWS and Emotional and Behavioral Patterns. This report analyzed conversations parents and caregivers were having on the topic of emotional and behavioral issues. In a testament to the dedication and connection of parents to their loved ones, the largest primary emotion category was “Happiness”, with “Love” being the...
Victory for the PWS Community in Illinois
We are thrilled to celebrate a major step forward for individuals living with Prader-Willi syndrome (PWS) and the broader rare disease community in Illinois! On February 4, 2025, SB1651, filed by Senator Morrison, and HB2541, filed by Representative La Ha, were introduced—marking a critical move toward better support and services for those affected by PWS. ...
Steps Toward More Independent Living
submitted by Lindi Kessinger, Mom to Maddi, living with PWS What steps did you take to prepare for her life as an adult? We honestly had a lot of help and 1:1 with Maddi through one of our waiver programs. We were unsuccessful in our small public school system and homeschooled the last few years...
Ask Nurse Lynn: Digestion and Vasovagal Episodes
Question: Female, 40 years old, unknown subtype My sister has digestive episodes (severe constipation and now vomiting which she didn’t do as child) which usually result in vasovagal episodes and her complaining of side and chest pain. Nothing hospitals can do but how should my parents better manage her diet? Nurse Lynn’s Response: Digestive issues,...
Spotlight on Hope: Cierra’s Success
contributed by Mary Lesser Cierra was born with PWS. We did not get a diagnosis until she was about 5. Cierra is a 30-year-old happy, fun, energetic person, Cierra has a great sense of humor and loves animals and children. Cierra graduated high school and Vo tech with a diploma in childcare. She has 2...
Ask Nurse Lynn: GLP-1 Medications and PWS
Question: Female, 32 years old, Deletion subtype Is there any promise in trying Wegovy for weight loss? If so, what would be the side effects we would need to look out for? Nurse Lynn’s Response: There is interest in exploring GLP-1 medications like Wegovy for weight loss in individuals with PWS, but there are significant...
Building Knowledge and Confidence: PWSA | USA’s Transformative Training Programs
At PWSA | USA, we believe education is the cornerstone of effective care. For professionals working with individuals living with Prader-Willi syndrome (PWS) – from educators and healthcare providers to law enforcement and residential caregivers – knowledge builds the confidence needed to create safe and empowering environments. Navigating the complexities of PWS requires not only...
Advocates Secure Policy Progress for PWS Community at Texas Governor’s Committee on People with Disabilities Meeting
On Friday, January 24, 2025, the Texas Prader-Willi syndrome (PWS) community achieved a significant milestone during the Texas Governor’s Committee on People with Disabilities meeting. Our dedicated advocates Tim Joniec and June Finnerty testified on behalf of individuals living with PWS in Texas, shedding light on critical unmet needs and proposing policy changes to better...
Anxiety and PWS
contributed by Justice Rickenbach, 21-year-old living with PWS I sometimes wish people could see inside my head, hear the thoughts that can make everything seem so hard. I wish I could explain why sometimes this can overtake me and being reasonable is not even an option. For me anxiety is this voice inside my head...
Ask Nurse Lynn: Growth Hormone Dosage
Question: Male, 7 months old, UPD subtype We’re currently living in Dubai & doctors have very minimal experience with PWS cases. My son started GH last September at a 0.15mg, increased the dosage to 0.2mg where IGF-1 levels was 75 & after the 3rd sleep study the endocrinologist said it was safe to increase it...
Spotlight on Hope: Overcoming What Feels Impossible
contributed by Sheri Mills Potty training…It’s a big milestone, and one that is hard for our kids. We started at 2, and Lyra just couldn’t “feel” to let go or even that her bladder was full. That’s low muscle tone for you. We stopped and came back to it again at three. We found the...
Volunteer Spotlight | Leadership and Vision: More Than 20 Years of Service
Submitted by Stacy Ward Michelle Torbert, mom to Leslie, living with PWS, has been a dedicated volunteer with PWSA | USA for more than 20 years. She has led the Florida Chapter, served as a Board of Directors member, and held the position of Board Chair for several years. If there’s a committee or workgroup,...
Changes at FDA’s Center for Drug Evaluation and Research
The Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) would like to take a moment to acknowledge a significant leadership transition at the U.S. Food and Drug Administration (FDA). As Dr. Patrizia Cavazzoni steps down as Director of the Center for Drug Evaluation and Research (CDER), we express...
Ask Nurse Lynn: Determining Appropriate Setraline Dose
Question: Male, 19 years old, Deletion subtype My son is on Sertraline (Zoloft) and has been on quite a low dose, so under 25 mg for quite a while, in November we put his dose up by 2ml every week so now he is on 50 mg, one pill in the morning and one at...
Share Your PWSA | USA Volunteer Spotlight
Volunteers are a critical part of the work we do at PWSA | USA! We are incredibly grateful and inspired by the people who step up and offer their time, energy, wisdom, and support to help the families and individuals in the PWS community. In an effort to share our gratitude, we wanted to create...
Share Your “PWS in Adulthood” Story
We want to share your experiences caring for your adult loved one with PWS. Sharing your adult loved one’s story helps spread awareness of PWS to our community and beyond, and to the younger families who may benefit from having ideas of what adulthood in PWS can look like. It is also a way to...
Trial Transitions and Testimonials
A month ago, Freya transitioned from the 77-day double-blind portion of the Pitolisant trial to the open-label extension, which will last at least a year or as long as she is willing to participate – whichever is longer. If you’ve been following this blog series, you know I went into this with feelings of trepidation...
Ask Nurse Lynn: Managing Food-Related Behaviors
Question: Male, 9 years old, Deletion subtype My son is 9 years old and weighs 130-135 pounds. He eats every 10 minutes. Then throws up and eats some more. We are seriously running out of food cause he eats so much and we don’t have enough food for everyone. How can we better control his...
PWS Advocacy Master Class: Register Before January 13th!
Launching on January 13, 2025, the PWS Advocacy Master Class is a six-week program designed in collaboration with Patients Rising. It provides a robust curriculum for anyone passionate about becoming an effective advocate for PWS. Course Highlights: – Congress 101: A deep dive into how laws are made and how to engage with policymakers. – Pharmacy...
Spotlight on Hope: Lenny’s Business Fair Breakthrough
contributed by Cocoa Ma (Mom to Lenny, a 12-year-old living with PWS) Lenny has been passionate about art since he was 4 years old. Over the years, his dedication has led to several international awards, and his art has become not just a creative outlet but also a way for him to give back to...
Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year
As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion. Our story began in 1975, when Gene and...
A Global Network of Hope: How PWSA Egypt & Middle East is Transforming Lives
Imagine navigating the challenges of a rare diagnosis without access to the resources or support you need. For families and individuals in the Middle East affected by Prader-Willi syndrome (PWS), this was their reality – until recently. Thanks to the dedication of passionate advocates and the support of several PWS organizations, new doors of opportunity...
Ask Nurse Lynn: Late Diagnosis and Newborn Screening
Question: Female, 3.5 years old, UPD subtype Hello, I’m from Ontario Canada. We just received a diagnosis a couple of weeks ago. I see most of the children on this support group are being diagnosed within weeks of birth. Is PWS routine testing with your newborn screen? Just curious as I knew something was wrong...