Gigi and the Gents on stage at NF California's Rockin' Hops Music Festival on May 18th (Courtesy photo by Debbie Bell)
Two years ago, Debbie Bell sat on a bench in Lagoon Valley and wondered how she could make her fundraiser more than just a walk. While it was fun for her family, it also needed to raise awareness and support for Neurofibromatosis California, the nonprofit organization she directed.
After 20 years of walking to school, hiking trails and park trails to raise money, Bell thought a cornhole event sounded new and interesting. Her co-chair, Roy Owens, came up with an original proposal: a Band of the Bands music festival.
Harnessing the community's love of live music, this year's second annual Rockin' Hop Music Festival is a two-day, family-friendly event celebrating Neurofibromatosis Awareness Month.
Nine bands, including Smokehouse Reunion, Gigi and the Gents and Groovy Judy, are donating performances for the event, which will be held at Solano Brewing Company on May 18th and 19th. .
“My son didn't choose to have NF. It was just a genetic mutation,” Debbie Bell said. Their son, Carter, was diagnosed with neurofibromatosis when he was two months old. Neurological diseases cause tumors to grow along the nervous system, often restricting a person's movement depending on where the tumor forms.
“They have to get up every day and fight whatever battle it is,” Bell said.
It's been a battle for Bell, both as a mother and as executive director of NF California for 20 years. Since starting the nonprofit in 2004, Bell said, “When I meet someone (at NF) for the first time, whether it's the people we've helped, or someone in their 40s or her 50s, I feel that person's heart. I am amazed at how fulfilled I feel.
The festival is both a community fundraiser and an opportunity for Bell and her family to enjoy time together. With her impending CT scan on her mind, Bell and her family want to get out of the house instead of going to the hospital.
“We can offer events that are not inside a medical facility and are not heavy symposiums,” Bell said, but she believes they are important for pursuing answers and establishing care. says. “It's more of a fun social gathering, and we hope people can go home and relax and think, 'I was in a comfortable place.'”
While everyone's experience with NF is different, Carter's experience is familiar to those who have to manage surgeries and physical therapy throughout their daily lives. NF California amplifies these stories and hosts community events to spread awareness while providing individuals with NF the opportunity to connect with their peers.
“What comes out of this is friendship,” Bell said. “Hopefully, one day someone will be in a store or a restaurant and someone (with NF) is serving them and instead of looking at that person like, “I don't want you to serve me,'' they'll be able to say, “Oh. I hope people will say, “Please do that.'' Is there NF? ”
Among the festival's food trucks and vendors, Carter will set up his own table of rings made from titanium, tungsten, ceramic, carbon fiber and cobalt claw. For Carter, this creative outlet has been a hobby since he first learned about it in his senior year of high school.
“It gives me something to do other than just lie in bed and watch TV,” said Carter, who has displayed her work at farmers' markets before.
The event will also feature a silent auction and raffle to further support NF families and promote research.
If you go:
- what: rockin hops music festival
- when: May 18th and 19th, 11 a.m. to 8:30 p.m.11:00 a.m. to 7:30 p.m.
- where: Solano Brewing Company, 5500 Weber Road, Vacaville.
- ticket: free entrance