Thanks to the incredible generosity of an anonymous donor, PWSA | USA is thrilled to bring back Operation Holiday Cheer for 2024! This heartwarming initiative helps spread joy to families in need by easing the financial burden of the holiday season. Through this program, a select number of families affected by Prader-Willi syndrome will receive...
The Many Factors of Independence
contributed by Lynne Williams, mom to Jess, living with PWS Hi! My daughter, who is 27 years-old, has uniparental disomy (UPD) PWS, and lives in a group home. I contemplated independent living for her, and it was a very difficult decision to make. As a parent, you want the best for your kids, and being as...
Ask Nurse Lynn: Bowel Movements and Picking
Question: Female, 22 years-old, Unknown subtype I’m concerned about gastroparesis. I give my daughter one stool softener a day. Ok with her doc. She does not empty her stomach without picking at her bottom to stimulate. How do I address this issue? Nurse Lynn’s Response: This is actually very common for our individuals to rectal...
A Parent’s Perspective on their Child’s Clinical Trial
contributed by Susan Fries, mom to Roselyn, 7-year-old living with PWS “I feel like we are all waiting for that magic fix, and if it works for someone else then my kid must drink the kool-aid and it’ll work for them too. But we deep down know it doesn’t work that way as much as...
The Screening Appointment
contributed by Anne Fricke The intention of this series is to shed light on the process of enrolling and participating in a clinical trial, as well as to create a space to openly share the many emotions that are involved when a family decides whether or not to join. Part of the decision-making process should...
How We Got Here
contributed by Anne Fricke I lay awake in a pre-dawn haze the morning Freya was to take her first pill. We had been to Southern California twice already, a combination of 7 flights up and down the coastline, numerous hours of travel, and far too many airport meals, and I was still momentarily on the...
Update on Phase 3 COMPASS PWS Study from Acadia
September 24, 2024 Dear Prader-Willi Syndrome Community, We are pleased to share an update on the 12-week, pivotal Phase 3 COMPASS PWS study evaluating the efficacy and safety of carbetocin nasal spray (ACP-101), an investigational drug, for the treatment of hyperphagia in Prader-Willi syndrome. The study was initiated in the United States in November 2023...
Share Your Halloween Tips and Tricks for PWSA | USA’s PWS United Podcast
Halloween is just around the corner, and with it come questions and uncertainty for our PWS families. It's only a matter of time before candy and treats will being offered in schools and throughout the neighborhoods, and we want to know your tricks! The PWS community is invited to be a part of a special...
Ask Nurse Lynn: Urinary Tract Infection in Female Infant
Question: Female, 6 months old, UPD My 6mo old tested positive for a UTI today (culture result: Klebsiella pneumoniae). She has no other symptoms besides occasional foul-smelling urine. One concern is the duration that the infection has gone untreated. I first noticed her urine about 2 weeks ago but second guessed for a while until...
Getting a Service Dog
In a few months, Pia Dorson and her family will be welcoming a service dog into their home. Their middle daughter, Zahra, is a 6-year-old living with PWS. While Zahra may be the catalyst for this family addition, Pia wanted to be sure that their other children would have access to this dog as well....
Obtaining and Training a Service Dog
Contributed by Rachel Johnson People have called us “lucky” to have a service dog. I chuckle when I hear this because the reality is, we didn’t get a service dog for the fun of it. Although having Stanley in our lives is a true joy, we worked for him because we needed the help. Life...
Service Dog at Home and at School
Contributed by Winnie White I was not a dog person, but as parents, you will do whatever needs to be done to help your child. As Sandy Kay has gotten older and her food anxiety has significantly increased, we began to investigate other ways to treat anxiety in addition to medication through a doctor’s care. I talked...
Narcolepsy in PWS
Contributed by Justice Rickenbach Ever since I can remember, I have been tired. Not the kind of tired you feel when you stay up too late or how you feel at the end of a busy day. The tired I feel is more like how you would feel if you were forced to stay awake...
PWS Advocates in Minnesota Meet with Rep. Angie Craig: A Meaningful Step in Advocacy
In a powerful demonstration of community advocacy, several members of the Prader-Willi syndrome (PWS) community recently met with Representative Angie Craig (D-MN) to share their stories and advocate for those living with PWS. This meeting in Minnesota, which was scheduled as a follow-up to PWSA | USA’s 2024 D.C. Fly-In, highlighted the importance of ongoing...
Ask Nurse Lynn: Food Anxiety
Question: Male, 33 years-old, Deletion My son is mostly behaving, and he is not aggressive. However lately he gets up in the morning upset, anxious, and wants more food. For the rest of the day, he is OK. He used to take Cipralex. He does not want to take it anymore. Not that I have...
PWSA | USA’s Podcast has a New Name!
As part of our ongoing efforts to best serve the Prader-Willi syndrome community, we are introducing a new name for our podcast. Moving forward, PWSA | USA’s podcast will be known as PWS United! This change is based on valuable feedback we’ve received from the community. Some members are sharing there is occasional confusion between...
Spotlight on Hope: Climbing (Another) Mountain
contributed by Anne Fricke Last year around this time, Freya climbed Mount Lassen (a 10,000+ foot volcano in Northern California). This year, her class went on another adventure, a backpacking trip to Mount Eddy. The mountain was a little smaller, but the camping trip was more challenging. Freya handled it all like a champ! This...
PWS Moms’ Hiking Weekend
contributed by Amy McDougall “Alone, we can do so little; together, we can do so much.” – Helen Keller Community is such a powerful thing. Last year, I decided to start hiking in an effort to meet some personal goals. I reached out to another PWS mom in my state in hopes of finding a...
FDA Responds to PWS Advocacy Coalition’s Petition on DCCR
PWSA | USA is excited to share an update on the continuous advocacy efforts for the PWS community. We have received a letter from the U.S. Food and Drug Administration (FDA) in response to a petition submitted by the PWS Advocacy Coalition (submitted on July 31, 2024). This petition urged the FDA to prioritize the...
Ask Nurse Lynn: Help with Bowel Movements
Question: Female, 40 years-old, Deletion Not every time, but a lot of the time, my daughter will feel like she needs help with her bowel movements, and she feels the need to reach in her rectum to complete the movement. She knows this is not good but worries that if she doesn’t it will come...
Grandparents Day 2024
“‘A grandmother’s love is forever and always.’ Thank you and Happy Grandparents Day. We love and appreciate you so much!” Grandparents names: Left- Grandma Tilly (RIP) Right- Grandma Lisa Submitted by: Staishya Siller “Mamie, thank you for always playing and having fun with me! I miss you. Come back soon to visit!” Grandparent’s name: Alizeta...
The Importance of Newborn Screening
contributed by Dini Rao As I think about the importance of newborn screening, I can’t help but wonder how this would have completely changed my family’s lives. My daughter Ayoni was diagnosed with Prader Willi Syndrome late at nearly five years old. At birth, she had many of the telltale signs of Prader Willi Syndrome...
FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics’ DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency’s regulatory decision-making. As part of the Advisory Committee Meeting, interested community members are encouraged to share...
Ask Nurse Lynn: Medication for Blood Pressure and Anxiety
Question: Male, 25-years-old, unknown subtype Son, aged 25, was previously taking Propranol for blood pressure and anxiety. We were noticing increased anxiety and PCP just switched him to Lisinopril and Venlafax ER 75. Are these 2 meds found to be safe for patients with PWS?? Nurse Lynn’s Response: Unfortunately, your question is more complicated than...