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Category: Blog

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...

Aging Research in Prader-Willi Syndrome

Compiled by Barb Dorn, RN, BSN People with PWS are growing old. Many of this may be the result of our increased knowledge in supporting and caring for the person with PWS. We have learned to replenish hormone deficiencies and manage their diet and food security. We have identified critical health issues and know that...

a child with Prader-Willi syndrome sys goodbye to her mom in front of a school bus

Anxiety and School

The school year is fast approaching for some families, and well underway for others. Whether your loved one is returning to a familiar school with familiar faces, or beginning a new adventure in an unknown place, they may be feeling a mix of excitement and trepidation. Change and the unknown can be very difficult for...

Various graphs showing the data that came from TREND community and conversations in the Prader-Willi Syndrome community

TREND Community Launch Report

PWSA | USA partnered with TREND Community to help further PWS research through conversations. For two years, TREND collected data from Facebook group conversations to gain important insight into the issues families were facing. Please note that there was no personal information attached to the data that was collected, but merely the keywords and topics...

Thank You, Congressional Letter Sign-Ons

PWSA | USA has submitted our “Congressional Letter of Support” to the FDA with 27 signatures from U.S. Congress members! This letter pushes for urgent development and approval of treatments for Prader-Willi syndrome. A big thank you to our advocates who shared this ask during the 2024 D.C. Fly-In and to the team leads who...

photos of an adult female with Prader-Willi Syndrome

Interdependence

contributed by Amy McDougall (mom to Noelle, 21) Our daughter has always been an independent spirit: bright, organized, willing to advocate for herself, and preferring to decide between choices. However, she also struggles greatly with hyperphagia, which can completely “short-circuit” her logical problem-solving skills. We certainly dreamed of a future in which a medication would...

A group of young kids with Prader-Willi syndrome laugh and smile while sitting under a tree

Navigating Peer Relationships with Prader-Willi Syndrome

As parents and caregivers, we want to see our loved ones successful in their relationships. Making connections with peers is a valuable part of adolescence and being in school. Some of the characteristics of PWS can make this challenging. Struggles with transitions, egocentrism, slower processing, excessive daytime sleepiness, and, of course, food concerns, can sometimes...

Two siblings with with their arms around each other, one with Prader-Willi Syndrome

Sibling Relationships

Sibling relationships can sometimes be the most challenging, and the most rewarding. Introduce a sibling with PWS, and this spectrum often becomes even more extreme. The friction and conflict may be far more frequent and difficult to manage, but the connections and support may be far sweeter. So how do we navigate these relationships? How...

Ask Nurse Lynn: Confabulation

Question: Male, 38, Deletion I have a question about what I think is confabulation. My son occasionally says things that are just not true, and I don’t really know how to respond. I don’t want to argue with him, but I do want him to know that what he said is wrong. The first time...

Photo of a group of adults with Prader-Willi Syndrome in a residential setting living room

Future Planning, College, and Relationships

Contributed by anonymous As our loved ones with PWS become adults, they want the same things as anyone else. They want to feel listened to, valued, have friendships/romantic relationships, have a sense of purpose, and live independently. We need to consider how we can accomplish this while considering our loved ones’ individual abilities and needs. Transitioning Into Adulthood Planning...

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