PWSA Blog

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...

photo of a girl with Prader-Wili syndrome getting blood work done

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...

A girl with Prader-Willi syndrome waits in a clinic room for the doctor to come in

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...

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....

a young girl with Prader-Willi syndrome poses with her mom, second picture of her service dog

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...

a child with prader-willi syndrome and narcolepsy rests frustratingly next to a stack of books

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...

Photo collage of moms of individuals with Prader-Willi syndrome posing at various places along their hike

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...

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...

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