Prader-Willi Syndrome

What is Prader-Willi syndrome?

Imagine your brain's "off switch" for hunger doesn't work. While the experiences of every individual and family affected by Prader-Willi syndrome (PWS) are unique, many face similar challenges that significantly impact their daily lives. PWS is a rare and complex genetic condition that affects everything from appetite to emotions to sleep. PWS affects chromosome 15 activity that disrupts normal hypothalamic function. At epm Therapeutics, we see the person behind the diagnosis, the families who love them, and the dedicated team of caregivers who surround them. Below is just one example of what a single day in the life of a PWS caregiver might look like.

A Typical Day In The Life

5:30 AM

Sarah’s phone alarm rings, but she’s already awake. Her 12-year-old son, Jon, has Prader-Willi syndrome (PWS), and his erratic sleep schedule means he’s often up before dawn—agitated and already fixated on food to fulfill the need in his stomach. Sarah hears Jon rattle the fridge. Did I forget to relock it last night? She sprints downstairs.

7:00 AM

Jon’s morning meal is precisely measured: 300 calories, pre-portioned. For years, they have installed locks on the fridge and the pantry and have used a timer to pace him. Sarah watches him scrape his plate with his fingers, licking the crumbs. "I’m still hungry," he says. She distracts him with a game on her smartphone, but his frustration grows. It’s a struggle getting him ready for the day.

11:00 AM

At Jon’s school, a well-meaning aide forgets to secure a classmate’s lunchbox. Jon grabs a sandwich from the pack and quickly eats it. The aide turns, startled. The classmate cries out. Jon’s face burns—not with guilt, but with the raw, gnawing need for more. What should Jon get fed? How do we replace his classmate’s meal? These questions hang in the air, unanswered. Just another complex challenge to everyone’s day.

3:15 PM

The teacher sighs when she recounts the story at pick-up. Sarah’s face burns. They don’t understand. He’s not doing this to be mean—he feels like he’s starving. Another addition to her long list of frustrations that she can’t do more to help Jon.

6:00 PM

Jon crashes. PWS hijacks his energy when he should be sleeping and vice-versa. He’s suddenly asleep at the kitchen table, head in his hands. Sarah carries him to the couch.

11:00 PM

Some nights, the bedtime rituals take hours—Jon’s OCD-like rigidity demands everything just so. When he finally drifts off, Sarah collapses on the couch. Before bed, she checks the locks on the fridge. Twice.

Many PWS Caregivers Share Stories Like Sarah’s

epm Therapeutics recognizes that for individuals and families affected by Prader-Willi syndrome (PWS), this diagnosis is not some abstract statistic about a rare disease—it is a daily reality with profound challenges.

 

Patients, family, and caregivers face:

  • 24/7 food security measures
  • Emotional and physical exhaustion
  • Limited treatment options

General signs and symptoms of Prader-Willi syndrome

  • Hyperphagia, constant hunger and food-seeking behaviors
  • Hypotonia, low muscle tone
  • Developmental delays
  • Obesity-related health risks
  • Anxiety and compulsive behaviors
  • Emotional outbursts
  • Cognitive challenges
  • Sleep disturbances

Patient, Family & Caregiver Resources & Support

Current Research & Hope for the Future

While there is no cure for PWS, researchers like our team at epm Therapeutics are making progress in understanding and managing many of its symptoms. Emerging therapies are exploring ways to address:


  • Appetite regulation
  • Sleep disorders
  • Behavioral symptoms


At epm Therapeutics, we're committed to advancing PWS research and developing targeted treatments to improve the quality of life for patients and families. We invite families, caregivers and advocates to stay connected with us as we work together toward better understanding and treatments for PWS.

What's Coming Next

The science is advancing every day. epm Therapeutics is proud to be part of a growing community of researchers, families, and advocates working to make improved treatments available.


To patients and families: You are not alone. We are a community.


To investors: This is where meaningful science meets profound human need.