PWSA Blog

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...

two x-ray images of adults with Prader-Willi syndrome and scoliosis

Scoliosis Awareness

June is National Scoliosis Awareness Month. Scoliosis is a condition in which a person’s spine has an irregular curve. According to Pediatric Orthopaedic Dr. Harold van Bosse, MD, “Children with Prader-Willi Syndrome have about a 70% risk of developing scoliosis before the end of growth.” It is important for families to be aware of the signs, risks, and...

Ask Nurse Lynn: Estrogen and Progesterone

Question: Female, 21, Deletion My daughter with PWS (deletion) is wondering how common it is for females to be told by an endocrinologist to take estrogen and progesterone for the rest of their lives. She has already developed a blood clot (now resolved) and was told by another doctor that hormonal therapy could be a...

TREND Community

TREND Community is a “community-powered data analytics company, unlocking people’s conversations about living with rare and chronic diseases, delivering actionable, real-world insights, and driving progress in health care.”  For 2.5 years PWSA | USA has been partnering with TREND Community to turn our online support groups into a source of real-world evidence. By collecting the...

Staying Safe in the Heat

Summer is well underway, and parts of the U.S. are experiencing extreme temperatures and high heat index warnings. While these conditions can pose a threat to anyone, they especially put our loved ones with PWS at risk for heat stroke and heat exhaustion. Due to the dysfunction of the hypothalamus, Individuals with PWS struggle to...

Empowering Diversity and Inclusion for the PWS Community

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families. This initiative, undertaken with the active involvement of several community members, seeks to ensure...

Photo of toddler with Prader-Willi syndrome lounging on a chair on Mexico

Traveling Abroad with PWS

contributed by Anne Fricke When Language Is an Obstacle The first time we traveled outside the US with Freya, I packed, as the saying goes, “everything but the kitchen sink.” Along with our ergo baby carrier and a cheap stroller we bought for the occasion, we traveled with our cooler for the growth hormone and...

Adult with Prader-Willi syndrome on horseback

Connections, Education, and Supervision

contributed by Jamie Prentice, Mom to Logan, 31, living with PWS Advice for Transitioning into Adulthood It is important to gather information and familiarize yourself with SSI, your state’s Department of Disabilities and Special Needs, Guardianship, Stable Accounts, and Special Needs Trusts long before your child becomes an adult. I would start taking workshops or...

Post a Message for Father’s Day

*In the interest of space, please note that when we use the term “Dad”, we not only refer to biological fathers, but also those male figures who are an outstanding, constant, and loving presence in your loved one’s life. And you single moms filling both roles, this is for you as well! We know that...

Photo collage of individuals with Prader-Willi syndrome doing various activities like horseback riding, hockey, swimming, saxophone

No Limits

When we receive a diagnosis of Prader-Willi syndrome, often we also receive a litany of “cannots” and “will nevers”. We may let ourselves dwell, even if momentarily, in that world of negatives and adventures never-to-be. We mourn the future we thought we once possessed, thought our loved one possessed. Some would argue it is part...

Ask Nurse Lynn: Procreation and Genetics in PWS

Question: Female, 34, Deletion My daughter continues to wonder how/why some ladies with PWS have been able to conceive, give birth. As a teenager, an ultrasound determined that she had “follicles”, but she’s not ever menstruated. She continues to want to investigate the possibility of becoming pregnant. We’ve explained that this is highly unlikely, but...

Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment

Aardvark Therapeutics has just hit a major milestone with an exciting $85 million Series C financing round! Led by Decheng Capital, with additional participation from several investors, including PWSA | USA, this funding is set to drive the development of ARD-101, a groundbreaking treatment for hyperphagia in Prader-Willi syndrome patients. ARD-101 showed promising early trial...

Nutrition Discourse in the PWS Community

Why is it important to talk about food in the PWS community? As of now, Growth Hormone is the only FDA approved treatment for PWS, and it does not address the hallmark symptom of hyperphagia (excessive hunger). The most common and effective strategies for managing the symptoms of hyperphagia and slower metabolism are through diet...

Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day

May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the...

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