Life Connected

One Couple's Search for the Cure to Fatal Brain Disease

Brandi Evans and her husband are hosting a walk to fund research on Creutzfeldt-Jakob disease, the condition that killed Brandi's father.

Three years ago, Brandi Evans' father, Neil Foster, started experiencing a pain in his leg. What seemed like nothing at first quickly became much worse: Brandi and her family learned that her father had something called Creutzfeldt-Jakob disease, otherwise known as CJD. His brain was slowly destroying itself.

"It just takes everything away from you,” Brandi said. “It takes away your ability to function properly, carry a conversation, losing your motor skills.”

Her father’s death gave Brandi a new purpose. Now she and her husband Jeffrey are doing everything they can to educate the public about CJD and to find a cure. The two have become somewhat experts on the disease, but they never expected a chance encounter over a cup of coffee to give them hope for a cure.

Jeffrey is the director of Nespresso’s boutique shop in Beverly Hills. One day, he struck up a casual conversation with a customer.

“I just matter-of-factly said, ‘And what do you do, sir?’” Jeffrey said. “And he said, ‘I’m a neuroscientist.’”

That customer was Dr. Babak Kateb, the scientific director at California Neurological Institute and president of the Brain Mapping Foundation. After meeting Jeffrey, Kateb spoke to his own team of researchers. They have since developed a new approach that uses light to detect brain abnormalities like CJD.

The research is complicated, but Brandi says any attempt to discover why CJD happens is a step forward.

“I would hope physicians would see this and would be curious to gain more information,” she said.

CJD is so rare that only 350 cases are diagnosed every year in the U.S, according to the Center for Disease Control. However, research is still necessary to find a cure for the devastating disease.

That is where the CJD Foundation can help. Its president Debbie Yobs says the foundation works with families to connect money for research with scientists willing to take on the challenge. Every year, the foundation presents a Strides for CJD 5k run/walk to raise awareness.

“It’s just so important for us to get out there and do something about it,” Brandi said.

For Brandi and Jeffrey, the CJD Foundation is an opportunity to further support the cause they both care about. The two are hosting a Strides for CJD event at Beverly Hills High School on Sunday, Oct. 2.

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