Local family still hopeful for cure ahead of the annual Walk to Defeat ALS

The annual Walk to Defeat ALS is right around the corner.

WASHINGTON (WUSA9) - The countdown is on to the Walk to Defeat ALS, an annual event that raises money to support local families and fund research for a cure.

When Alexis Chinery, 27, accepted the ALS Ice Bucket challenge in 2014, she did not know much about the disease until a year later when her mother, Susan, was diagnosed with it.

"I felt so helpless, not just for myself, but for my mom," said Chinery, who had tears in her eyes.

Putting dreams of becoming a cinematographer on hold, Chinery, who has two younger brothers took on the role of a caretaker before hiring help last year. Her hardworking father and younger brothers share the responsibility as well.

"It's not easy because at times I get very emotional," said Fatima Sanu, who helps Chinery and her family. 

"It took a while for us to understand what the disease was," Chinery said. "It's very scary."

"You want to sit there, do your research, just figure out how you change something about it," she said.

ALS, also known as Lou Gehrig's disease is progressive. It attacks the nerve cells in the brain and spinal cord, which eventually affects a person's ability to move or even breathe. There is no cure. The average life expectancy is between two and five years, according to the ALS Association. About 20 percent live five years or more, and up to ten percent will survive more than ten years, according to the organization.

"My mom is not able to lift her hands, anything that deals with feeding, bathing, clothing , she's unable to do," Chinery explained. "My mother now has a trach [tube] put in her throat. "

"I feel stuck in a body that doesn't work," said Mrs. Chinery, through a communication device.

Since Susan is unable to speak, she uses an eye-gaze technology called Tobii. She types the letters with her eyes. Then, the machine speaks for her.

"The hardest part is being dependent on everyone else," said Mrs. Chinery via Tobii. "My daughter is an angel, heaven sent."

"She does so much,” she said. “ I worry about her sacrifice for me."

According to the ALS Association, only five to 10 percent of cases in the U.S are hereditary. The other cases are sporadic. An average of 5,600 people are diagnosed each year.

"We don't really know when the symptoms of ALS started creeping in because it happened after a major back surgery," Chinery said. 

On Oct. 14., the regional chapter of the ALS Association will have its annual Walk to Defeat ALS on the National Mall.

Each year, the walk draws thousands of people. The fundraiser supports hundreds of local families through free services and programs. It also funds research to find a cure. The goal is to raise $650,000 this year.

"We're ready to receive it [cure] and we're not going to give up until we get it," Chinery said.

In May, the Federal Drug Administration(FDA) approved a drug called Radicava, also known as Edaravone, to help treat ALS. It was the first new drug for the disease in more than 20 years.

If you would like to join the cause, you can register for the walk or donate here.

© 2017 WUSA-TV


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