Dear PWS Families, We understand that hearing about the FDA’s extension of the review period for DCCR (diazoxide choline controlled release) may bring a mix of emotions, from hope to concern. Please know that this is a normal and expected part of the FDA’s thorough process, especially for a rare disease medication that has been...
FDA Extends Review Period for DCCR: What It Means for the PWS Community
On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide choline) extended-release tablets—a potential treatment for individuals with Prader-Willi syndrome (PWS) aged four and older who experience hyperphagia. The U.S. Food and Drug Administration (FDA) has extended the review period for this NDA, pushing the...
An Adoption Story
contributed by Jordan Zak, mom to Sawyer (living with PWS) On June 27th, 2021, we welcomed our first son into the world. Grant was born with Trisomy 18 and due to heart complications, he passed away on June 29, 2021. Our hearts were broken but we knew his life had meaning and there was a...
Ask Nurse Lynn: Excessive Sexual Behaviors
Question: Male, 15 years old, unknown subtype Hi there, Nurse Lynn. I have to ask this question; my son is 15 and he is constantly masturbating! I mean, I know teenage boys do this. It just seems an extreme. Should I be worried? Nurse Lynn’s Response: Obsessive-compulsive-like tendencies are common in individuals with PWS. These...
Preparing for the Holidays
How do we prepare for the holidays? Even in “typical” homes, preparing for the holidays can be challenging. Our planning may be filled with questions like who is hosting, who is bringing what dish, who is invited, which family are we visiting on which day, who gets the presents, who makes the mashed potatoes, is...
Ask Nurse Lynn: Seizures
Question: Female, 40 years old, Deletion subtype My daughter had 2 seizures 15 years ago. The doctor wants to now take her off all preventive meds. How do we know if the meds are preventing seizures? She is scheduled for a 3-day EEG next week and has reduced her meds by 50%. We have lost...
International 15q Day
International 15q Day If you’ve been in the Prader-Willi syndrome (PWS) community for a while, then you likely know that PWS is a rare genetic disorder caused by an abnormality with the 15th chromosome. International 15q Day is a day to bring awareness to PWS along with two other syndromes caused by abnormalities in the...
PWSA | USA Hope in Action: A Lifeline for Families in Crisis
Managing daily life can bring challenges for families and individuals affected by Prader-Willi syndrome (PWS), but when a crisis strikes, having someone to lean on who truly understands can make all the difference. PWSA | USA’s medical and family support services offer a vital safety net, guiding families through moments that feel overwhelming and providing...
PWSA | USA Hope in Action: School Support
At PWSA | USA, we recognize that success in school for individuals with Prader-Willi syndrome (PWS) involves more than academic support. It requires a network of dedicated assistance to meet each student’s unique needs. This is where we come in, helping families navigate the often-challenging education system to ensure their children receive the support they...
Ask Nurse Lynn: Anesthesia Concerns and Dental Procedure
Question: Female, 38 years old, Deletion subtype Our daughter has significant dental issues and needs to have multiple procedures. The dentist has recommended that we tackle the issues all at once in a hospital setting with anesthesia. I am immediately concerned by all the possible complications but also recognize the need to try and save...
Simple Tools for Managing Stress
Wednesday, November 6th, was National Stress Awareness Day. Most of us know that stress, especially chronic stress, has a negative effect on our health. Stress can cause a list of physical and mental detriments, impacting our heart and reproductive health, lowering our immune system, and increasing our chances of mental health issues. Knowing that fact...
TREND Pulse Report: PWS and Pain
We are excited to share the next PWS Pulse Report that focuses on pain. TREND looked at the most common types of pain and the affected body parts. TREND also analyzed the types of pain medications discussed as well as the associated sentiments. Finally, they explored the experience of reduced pain sensitivity in individuals with...
Ask Nurse Lynn: Medications and Mental Health
Question: Male, 35 years old, Deletion subtype My son has been on the same meds for 25 years through the PWS institute in PA years ago: Trileptal 300mg x 2 a day and lithium 150mg x 2 a day. About a year ago he started having more aggression and more outbursts, so his doctor started...
Workplace Assistance
As Brooke Fuller, an adult living with PWS, recently said in a PWS United podcast, “Everyone has the same condition, but we’re all different.” The PWS in Adulthood blog series seeks to document the variety of ways adults with PWS find their version of independence, or interdependence, and how they participate in their families and...
PWSA | USA Advocates for PWS on Capitol Hill and NORD Breakthrough Summit
In a powerful week of advocacy, Dorothea Lantz, Director of Community Engagement at PWSA | USA, represented Prader-Willi syndrome (PWS) on Capitol Hill and at the 2024 NORD Breakthrough Summit in Washington, D.C., from October 20–22. The Summit gathered leaders across the rare disease community, including patient advocates, healthcare providers, researchers, and policymakers, all united...
Ask Nurse Lynn: Emergency Information Folder
Question: Female, 22 years-old, Deletion Does the association have a letter or document of some type that could be given to a doctor in an emergency situation, in order to give them a quick understanding of PWS and the potential medical impacts? Perhaps it could even be attached to a PWS patient’s medical record so...
Help PWSA | USA Turn Hope into Action: Support the 2024 Angel Drive Campaign
Give the Gift of HOPE This Holiday Season! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity. Click Here...
Baseline and Video Interview
contributed by Anne Fricke (This post picks up from “The Screening Appointment” if you would like to start there.) Baseline Appointment (1.5 hours, on-site): Spending a night in southern California is not my idea of fun or relaxation. During our first trip, Freya enjoyed the arcade on the pier and splashing in a slightly warmer...
Ask Nurse Lynn: Life Expectancy and Aging Concerns
Question: Male, 25 years old, Deletion subtype Our son has gained 45 lbs. in the last two years since living on his own (now 220 lbs.). He is independent and successfully holds down a job and has an apartment. Two questions: 1. We recently read that the average age of death is still 30 years...
Adults with PWS Advisory Board Gathers in Phoenix: Shaping the Future of Support, Advocacy for Individuals Living with PWS
This week, members of PWSA | USA’s Adults with Prader-Willi Syndrome (PWS) Advisory Board gathered in Phoenix, Arizona, for a multi-day meeting to discuss upcoming initiatives and programs. Among the key topics was planning for the Adults with PWS Conference, a half-day event that will take place during the 2025 International PWS Conference on June...
Forces of Nature, A PWS Book Review
Book reviewed by Lisa Graziano, M.A., LMFT, PWS parent and long-time advocate Forces of Nature: A Memoir of Family, Loss, and Finding HomeWritten by Gina DeMillo WagnerI recently stumbled across this book and purchased it after learning it was written by a woman whosebrother had Prader-Willi syndrome. Amazon’s description reads, “Gina DeMillo Wagner’s brother Alan...
Ask Nurse Lynn: Aging in PWS
Question: Female, 62 years old, unknown subtype My sister has PWS. We live in Quebec Canada. There is so little information about how people with PWS age. We have reduced her meds recently due to aging (Bupropion by half and she is now taking Lorazepam to handle side effects). She takes medicine due to pre-diabetes....