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Nashville couple leading new efforts to treat, cure ALS

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Posted at 4:54 PM, Sep 03, 2021
and last updated 2021-09-03 19:27:18-04

NASHVILLE, Tenn. (WTVF) — A Nashville couple bravely battling ALS, or Lou Gehrig's Disease, is working to raise money to ramp up research that could save lives.

ALS impacts around 5,000 people each year, and it has no cure and limited treatment options. After a diagnosis, patients are often given only a couple of years to live. The devastating disease targets nerve cells in the brain and the spinal cord, and eventually impacts a patient's ability to walk, speak and breathe.

Eben Cathey and Evan Campa just celebrated their seventh wedding anniversary. After getting married, building successful careers and becoming parents to two beautiful children, their lives changed dramatically three years ago. After experiencing some stiffness in her calf and muscle weakness, Evan was diagnosed with ALS at the age of 37. She visited seven different neurologists over the course of a year and half before getting the diagnosis.

"It was devastating, definitely devastating," said Evan Campa.

"There's no effective treatment or cure," said Eben Cathey. "Really, often times you get a diagnosis, and it's just best of luck."

Within just months, the disease started to impact Evan's ability to walk and speak. She is currently enrolled in a clinical trial and takes 40 pills a day to help slow the progression of the disease.

Evan shares the struggles of living with ALS on her blog and connects with others across the country who are also fighting to bring awareness to the disease. To help push research further and find better treatment options for patients, the Live Like Lou Foundation is teaming up with Vanderbilt University Medical Center to raise $3.5 million. The money will help recruit a new lab researcher who would be focused on finding more options for patients.

Evan and Eben are the face of the campaign, and are doing everything they can to help.

"The timeline for ALS is not kind," said Eben Cathey. "When we think about how we want to spend our time, we want to put energy into finding a treatment or cure. We're just 100 percent full steam ahead every day."

The ongoing campaign aims to make Vanderbilt University Medical Center a research hub for ALS.

"We are going to build ALS research at Vanderbilt so we can not only care for patients on a daily basis, but also to identify new treatments," said Dr. Dane Chetkovich, Chairman of Neurology at Vanderbilt University Medical Center.

"To build something there that's going to move toward a treatment or cure would be incredible special," added Eben Cathey.

Vanderbilt University Medical Center currently has an ALS clinic that serves around 126 patients each year. The clinic is open once a month and provides patients with everything from physical to speech therapy in one location.

"Our job is basically to try and keep people as functional as they can be, for as long as they can so they have some meaning with the time they have," said Dr. Amanda Peltier, Director of the ALS clinic.

Dr. Peltier said additional funding for research is the key to finding new options for patients.

"I think as we are able to study more drugs and we get smarter on how to study the drugs, we will have meaningful therapies for patients," said Dr. Peltier.

"It's a really exciting time because there is so much opportunity for new treatments to help these patients," added Dr. Chetkovich.

Evan and Eben plan to keep raising money and attention for ALS and believe a big breakthrough is within reach.

"We are closer to finding a treatment than ever before," said Eben Cathey. "There have been more advances in the last 10 years than in the history of ALS. We are really close."

"Hopefully, within my lifetime as a doctor, I will have much effective therapies for these patients," said Dr. Peltier.

To support Evan's campaign to raise $3.5 million for new ALS research at Vanderbilt University Medical Center, donate at THIS LINK, or mail your contribution payable to Vanderbilt University Medical Center, with "Evan Campa" in the memo, and mail to: Vanderbilt University Medical CenterAttn: Erin Morrison 3322 West End Avenue Suite 900, Nashville, TN 37203.

Friends have also been collecting donations to help Evan and Eben with the daily expenses associated with ALS. To make a donation visit: https://www.gofundme.com/f/support-evan-and-her-family-in-fight-against-als

To learn more about the Live Like Lou Foundation visit: https://livelikelou.org/index.cfm?fuseaction=donorDrive.team&teamID=5096