PWSA Blog

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...

An adult with Prader-Willi Syndrome poses mid-swim in a pool

Creating a Safe Home

contributed by Nancy Christoff My daughter, Nicole (37) has PWS and has been living independently in Senior housing (a five-minute walk from my home) for about 10 years.  We’ve created a mini tailored group home without the group. I don’t know if a cat counts in the headcount – LOL. Nicole gets lots of day...

PWS United Podcast: How to Listen

Welcome to PWS United, a podcast for the Prader-Willi syndrome community, brought to you by PWSA | USA. This podcast seeks to inform the community (and beyond) of the latest news in research, advocacy, and our family support offerings. By bringing together staff, volunteers, specialists in PWS treatment, representatives from biotech and pharmaceutical companies, caregivers,...

On Grief

Contributed by Anne Fricke Trauma. Sometimes we don’t notice it in the moment. We are in the midst of the battle with our weapons ready, and it is only after we have grown accustomed to the fight that the battle rage starts to dissipate, the hum of adrenaline gives way to bird song, and our...

Ask Nurse Lynn: Puberty in Females

Question: Female, 17years-old, UPD 2 Questions for you: It’s about myself for my knowledge of my condition. How many times out of ten do people with my disability start their period by themselves? And if they don’t start on their own after you take medicine to induce it, will they start on their own the...

Empowering Heroes: Residential Providers Conference

“This event would not have been possible without our sponsors, Soleno Therapeutics, Harmony Biosciences, and Acadia Pharmaceuticals. They recognize and see the needed value for residential providers to have opportunities to invest in professional development for their staff, learn from experts, and bond with fellow provider agencies.” – Stacy Ward, MS, BCBA, PWSA | USA...

Ask Nurse Lynn: Heat Rash

Question: Male, 3 years-old, Deletion Our son gets a rash every single time he has a fever. This started this year, and he has now been sick three times. Is this common for PWS children? He also turns red and appears to have a rash with warmer baths, but the redness subsides after about an...

National Nonprofit Day

“If you can’t feed a hundred people, then just feed one.” ― Mother Teresa By supporting PWSA | USA, you can help more than one. On August 17, 2024, we are honoring National Nonprofit Day. As a national nonprofit organization about to celebrate 50 years, PWSA | USA understands the importance of serving the community...

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