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...
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...
FDA Accepts Application for New Drug DCCR, Moves to Priority Review
Exciting news for the Prader-Willi syndrome (PWS) community! Soleno Therapeutics has announced that the FDA has accepted their new drug application (NDA) for DCCR, a drug designed to treat hyperphagia in individuals with PWS aged 4 and older. This acceptance is a major first step, and the FDA has granted Priority Review, recognizing the potential...
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...
Introducing PWS Connect: The New Podcast for the Prader-Willi Syndrome Community
We are excited to announce that PWS Connect, a brand-new podcast from PWSA | USA, is launching on Friday, August 30, 2024, across all major podcast platforms. PWS Connect will be your go-to source for the latest news, research, advocacy efforts, and family support in the Prader-Willi syndrome (PWS) community. At PWSA | USA, our...
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...