Every year, there are numerous unique ways to get involved in the rare disease community and help raise awareness. One example? The Harvest Hope for PWS event — a virtual “turkey trot” challenge to help raise awareness around Prader-Willi syndrome (PWS). According to Prader-Willi News, the overall challenge will take place from October 1, 2021, through November 25, 2021.
Harvesting Hope for PWS
So what exactly is Harvesting Hope for PWS? Spearheaded by the Foundation for Prader-Willi Research (FPWR), this virtual event asks participants to run, walk, or jog a certain distance. Medals will be given out for those who complete 13.1 miles, 26.2 miles, 50 miles, and 100 miles. This website is designed to help advance PWS-related research, promote the benefits of exercise, and increase the overall awareness of what Prader-Willi syndrome is.
Every single participant will receive a personalized certificate at the end of the challenge, though patients will also receive a keychain to celebrate their accomplishments. Researchers believe that this event can really help to provide a better understanding of what this condition is and how research advances can help patients to live a better, fuller life.
To learn how you can get involved in Harvesting Hope for PWS, head to this website. Start your journey to raising awareness today!
Prader-Willi Syndrome (PWS)
An error in one or more genes located on chromosome 15 causes Prader-Willi syndrome (PWS), a rare genetic disorder characterized by a constant sense of hunger, as well as varied physical, cognitive, and behavioral issues. Patients may inherit two copies of chromosome 15 from the mother and none from the father, have some error in paternal genes, or not inherit the paternal genes from this chromosome. In many cases, these genetic aberrations are spontaneous. Regardless, the genetic error causes the hypothalamus to function improperly.
Patients with Prader-Willi syndrome often experience extreme and constant hunger starting around age 2. This hunger is known as hyperphagia. At birth, patients often present symptoms such as a poor sucking reflex and poor muscle tone, poor responsiveness, underdeveloped genitalia, and distinctive facial features. Symptoms which appear later, from early childhood to adulthood, include:
- Food cravings
- Obesity and weight gain
- Underdeveloped sex organs
- Poor growth
- Cognitive and developmental delays
- Speech problems
- Behavioral issues, such as aggression or compulsive behavior
- Sleep difficulties, such as sleep apnea or excessive sleepiness
- Distinctive facial features (narrow forehead, triangular mouth)