Cleveland, OH

Hope for Henley

Thank you for visiting my page! My name is Henley and I have Prader-Willi syndrome (PWS). I am taking one SMALL Step to help to raise funds for critical research to help eliminate the challenges of PWS.

Prader-Willi syndrome (PWS) is a rare genetic disorder affecting approximately 1 in 15,000 people—males and females equally, from all races and ethnicities. PWS is a life-threatening medical disorder caused by loss of active genetic material on chromosome 15. This affects:

  • Hormones
  • Muscle strength
  • Appetite
  • Behavior
  • Cognition and learning
  • Temperature regulation
  • Pain tolerance
  • Sleep patterns

Nearly every system in the body is impacted by a PWS diagnosis, but the hallmark symptom is hyperphagia, or continuous, extreme hunger. A person with PWS never feels full. Exacerbating this problem, those with PWS have a slow metabolism and need only a fraction of the calories of their typical peers. The result is easy weight gain. PWS is recognized as the leading genetic cause of life-threatening obesity in children.
People with PWS need strict environmental controls to avoid excessive weight gain, and often families must lock away all food to keep their loved ones safe. Other common symptoms of PWS include behavioral challenges, intellectual disability, obsessive-compulsive symptoms, anxiety, sleep problems, and scoliosis.

Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research. You can learn more about PWS and the research that is underway at

Please join me and donate now!

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