In an attempt to raise money for the relatively obscure and often ignored genetic disorder known as Prader-Willi Syndrome, parents of children with the disorder will stage a walkathon at Mar Vista Elementary School Sunday, September 10th.
The event will be sponsored by the Foundation for Prader-Willi Research, a nonprofit organization founded and maintained by parents and family members of persons with the syndrome.
Mar Vista Elementary School is at 330 Granville Ave., Mar Vista. The event begins at 10 a.m. and will include a raffle, a DJ, door prizes, crafts, food and drinks.
There will also be massages given by massage therapists at the event.
Entry fees are $15 for adults and $5 for children (ages two to 13). Children under two are free, families of four or more are $40 and entry fees are waived with a $100 donation.
All proceeds will support studies that will help doctors better understand and treat the disorder.
Afflicting one out of 15,000 births, the syndrome is often linked to impaired cognitive development and is recognized as the number-one cause of genetic obesity.
The symptoms of the disorder are caused by a dysfunction of the hypothalamus, a small endocrine gland that plays a major role in bodily functions such as hunger satiety, temperature regulation, fluid balance, puberty, vomiting and fertility.
Some treatments have been found to be effective, but more research needs to be done so that these children can live the rich, fulfilling lives that are within their grasp, foundation officials said.
Foundation members said they feel alone in their struggle because their organization is the only one dedicated to raising money to research this syndrome.
Therefore, events such as the Mar Vista Prader-Willi Walk-a-thon are so important to the foundation in its fight against this potentially debilitating disorder, foundation members said.
Information about various research projects supported by the foundation, www.PWSresearch .org