Two years after his daughter Abby was born with a rare genetic disorder, Prader-Willi syndrome, Jeff Porter and his wife Kari helped establish the Prader-Willi Syndrome Association Colorado to provide support to families in the Rocky Mountain region who are affected by the condition.
Prader-Willi syndrome is the most common genetic cause of life-threatening childhood obesity. Symptoms are due to a dysfunction in a portion of the brain called the hypothalamus, a small organ that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, hormones, emotions and fertility. In addition to obesity, people with Prader-Willi usually have cognitive challenges, with measured IQs well below the normal range.
“These kids are developmentally delayed, they have a lot of medical needs and see a lot of specialists,” said Porter, who like most people had never heard of Prader-Willi until it affected his family.
One of the services the association provides is an interdisciplinary clinic at the Denver Children’s Hospital. Eight times a year, kids with Prader-Willi can visit the clinic to meet with seven different specialists all at once, who then collaborate with each other on the child’s care.
“Our families sit in one room while the doctors rotate through to see them. It’s much more efficient,” Porter said.
The association also has funded research projects through the Foundation for Prader-Willi Research and is performing advocacy work to get the State of Colorado to recognize Prader-Willi Syndrom as a developmental disability.
To continue these activities, the organization needed money, so in 2006, Porter launched a Kentucky Derby fundraiser to benefit the association. At first the Porters held the event at their home in Castle Pines. It soon grew too large, so they moved it to the Cable Center at the University of Denver and ultimately to Infinity Park in Glendale.
The catered event, which now raises about $100,000 a year, offers an open bar with beer, wine and mint juleps. There’s also betting on the derby and silent and live auctions, as well as activities for kids.
Tickets for this year’s event, which starts at 2 p.m. on May 5, are available here. Families are welcome!
For a limited time, PWSA is offering discounted tickets for newcomers! If you purchase a ticket, you can receive an extra 20% off of the ticket price by using this code: LOUIELEE