Prader-Willi Patients, Family, Friends to Gather for California Walkathons

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Prader-Willi California Foundation

The Prader-Willi California Foundation is hosting its 18th Annual Walking for Prader-Willi Syndrome events in April, May, and June this year to raise awareness about Prader-Willi syndrome (PWS), a rare disease that is also the most common genetic cause of obesity.

Events are planned in Los Angeles on April 29 in Southern California; Clovis on May 5 in Central California; and San Rafael on June 2 in Northern California. At each event the public is invited to pack a lunch, enjoy the music and activities like face painting, all while supporting the PWS community.

The main purpose of these walks is to give members of the Prader-Willi syndrome community an opportunity to join others and enjoy a day filled with togetherness, support, and relaxation.

Parents of people with PWS may experience high stress levels, as Prader-Willi patients need 24/7 supervision. Since there is no medication that controls or reduces their appetite, patients may face serious consequences.

Because PWS is caused by a genetic mutation, it is not considered an eating disorder. The disease usually starts with the hallmark symptom of hyperphagia (overeating) in toddlers, causing an insatiable appetite and a drive to seek food that overrides the ability to make choices for their own safety.

Starting at an early age, the metabolism of Prader-Willi patients decreases by almost half of what it should be, meaning that on top of an insatiable appetite, they usually require drastically fewer calories than people who don’t have PWS at their age.

But there is hope. With an early, accurate diagnosis and appropriate supervised care, people with PWS can live healthier, happier lives.

The walk events include music, games, bounce houses, and arts and crafts activities. Registration begins at 10:30 a.m. and the walks start at 11 a.m., with activities planned until 2 p.m.

Those who are interested in the events but who are unable to attend can buy a yard sign to let their friends and neighbors know they are hosting a virtual walk in support of the 18th Annual Walking for PWS event.

Anyone can support a loved one or friend with a personalized Footprint Sign placed on the walk path of their choice.

Participants and nonparticipants may also download and print a brochure and a flier to bring to the events or to hand out around their neighborhood, schools, or workplace to reach as many people as possible to educate others about this debilitating rare condition.

There is also an exhibitor packet prepared for those who may want to network with parents and professionals to talk about their products and services, or to place their materials at an exhibitor booth.

Everyone can attend the walks or donate to each separate event by following this link.

Donations are tax-deductible and support the Prader-Willi California Foundation’s programs and services, including parent workshops, staff training for residential service providers, school training for teachers and assistants, support groups, and more.