Groundbreaking research at Kennedy Krieger Institute revealed the genetic cause of a very rare disease called Sturge-Weber syndrome, which means new trials and new hope for sufferers.Mobile users tap here for videoSturge-Weber syndrome is a neurological disorder that's often associated with a facial birthmark.Jenna Heck, who was diagnosed with it, goes through a lot as a 10-year-old."Jenna had seizures when she was younger between the ages of 2 and 3. She's on two high doses of seizure medications to control them. She suffers from migraines the most. She's been out of school at least two days a month," said the girl's mother, Ida Heck.There's also glaucoma. But while her challenges are more than skin deep, Jenna wears them on the outside in the form of a large facial birthmark."When we go out in public, that's when you notice. People stare," Heck said. "She calls her two best friends her bodyguards because they're constantly telling people, 'That birthmark is because ...' They want to explain it to them."In addition to her bodyguards, the fifth-grader has a team at Kennedy Krieger, where researchers have discovered the cause of Sturge-Weber syndrome."This will really give us great tools for developing new treatment strategies and better understandings of the syndrome. We've never had that before," said KKI's Dr. Anne Comi, the director of the Sturge-Weber Center.While researchers were able to identify the gene that causes the rare condition, Comi said the Heck family is equally responsible for the progress they've made because they raised $1 million for the cause."Their funding helped to support the research that went toward the discovery of the gene, so it's really been crucial," Comi said."It would be lovely to see kids who are first diagnosed never have issues," Heck said.Now that researchers have discovered the cause, the next step is treatment and hopefully a cure. The Hecks said they will be on board to fundraise, and they hope others will, too.