It’s the type of news that can be devastating, but for one Bowling Green couple it has been a spur to activity.
Ashley and Casey Brindley, when doctors told them three years ago that their daughter had a rare form of mitochondrial disease for which there’s no treatment, chose to get busy helping find one.
“I’m the type of person who can’t let go,” Ashley Brindley said, explaining why she is now president of a foundation dedicated to finding a cure for a disease called Hereditary Motor and Sensory Neuropathy Type VIB.
She and her husband created the Hadley Jo Foundation, named for their daughter who is now in kindergarten and dealing with a disease that affects the mitochondria organelles within cells that are responsible for creating most of the energy needed to sustain life and support organ function.
In Hadley Jo’s case, the disease caused a delay in gross motor skills and affected her vision.
Told that there was no cure and that the disease is degenerative, the Brindleys went into action. Visits to various doctors eventually led them to Cincinnati Children’s Hospital, where they found the impetus to create the foundation.
They met Dr. Taosheng Huang, director of that hospital’s Program of Mitochondrial Medicine, and Ashley Brindley said he inspired her to start the nonprofit.
“He discovered the disease and was doing research to find a treatment,” she said. “That was the first time we had some hope.
“Dr. Huang and I started talking about things, and he told me about a lady in California who started a foundation 10 years ago. They got so much funding that they found a treatment for her daughter.”
Following that example, the Brindleys launched their foundation last March and have since raised more than $80,000 for research being done at Cincinnati Children’s Hospital.
“We fundraised and fundraised,” Ashley Brindley said. “It’s like I have three full-time jobs now: my full-time work (at Camping World headquarters on Three Springs Road), being a mom and running the foundation.”
She said a barbecue event at Bowling Green Municipal Utilities raised $18,000 and a music and dinner event at The Venue raised another $15,000.
“The response from people in the community has been absolutely amazing,” Ashley Brindley said.
“I never would’ve thought it would get this big so quickly,” Casey Brindley said. “It’s pretty amazing what Ashley has done.”
Casey Brindley, who works at BGMU, said learning about the research being done by Huang took the couple “from no hope to a lot of hope.”
Huang has published four papers about mitochondrial diseases and possible treatments, and his experiments using mice have shown enough promise that he is considering doing clinical trials on humans.
The money provided by the Hadley Jo Foundation can help him realize that goal, Huang said.
“That family is wonderful, and they’ve done an outstanding job with the foundation,” he said. “I’m applying for grant funding to possibly do the clinical trials. This funding (from the Hadley Jo Foundation) is very important and will allow us to continue working on the mouse model while we wait on other funding.”
Ashley Brindley said Hadley Jo has adapted well to kindergarten, where she gets physical therapy, vision therapy and speech therapy; but she holds out hope that the day is coming when her daughter won’t need such adaptations.
“They are so close to a treatment,” she said. “They’ve made a lot of progress using treatments on mice.”
To help spur more progress, the Brindleys are looking to raise at least as much money this year as they raised in 2019.
“We hope to do even better this year,” Casey Brindley said. “The money helps so much.”
“We have a lot of big events planned,” Ashley Brindley said. “The research will help Hadley Jo’s disease and other mitochondrial diseases as well.”
She said 100 percent of the funds raised by the Hadley Jo Foundation will go toward finding a treatment and cure.
– More information about the foundation and upcoming fundraisers can be found at the hadleyjofoundation.org website.