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Advocates say bill could mean life or death for victims of Huntington's disease

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Posted at 7:07 PM, Jan 20, 2021
and last updated 2021-01-20 22:07:58-05

While all eyes are on the inauguration this week, the Huntington's Disease Society of America is leaning on a new Congress for a bill that they say is the difference between life and death for those who suffer from the rare brain disease.

Not a day goes by that Amber Boland doesn't think, remember, or talk about her mom. Boland and her now 10- and 8-year-old daughters took a picture in a sunflower field because Boland ‘s mom loved sunflowers. Boland didn't know it as a kid, but she would grow to watch her mother battle Huntington's, a neurodegenerative disease.

“I wouldn’t have had children if I did have it,” Boland said. “Growing up with my mom the way she was, I would have never wanted that for them.”

She says her mom repeated the same motions every day, and slept a lot, which meant she missed a lot of things. Important moments in Boland's life.

"She didn’t get to go to my high school graduation so she stayed home instead, and didn’t get to go to my wedding and didn’t get to meet my kids or anything so I make sure they know who she was,” Boland said.

Boland wants her children to know her mother, Bonnie, who didn't get the chance to be a “Grammy.”

And they watch the cardinals outside.

“It's something I’ve always heard, that cardinals are people from your past watching down on you,” Boland said.

Huntington's Disease does not discriminate. It causes a breakdown in a person's physical, mental, and emotional abilities and it has no cure.

“Huntington’s is a rare neurodegenerative disease. It's a brain disease, it affects about 41,000 Americans symptomatically each year. It’s relatively rare, but the challenge is it's an inherited mutation in the genes that causes the disease,” says Louise Vetter, CEO of Huntington's Disease Society of America, which has been around for about 50 years.

“By the widow of folk singer Woody Guthrie, her name was Marjorie. As Woody was losing his battle with Huntington’s, Marjorie made a commitment to help other families have more answers than she did,” says Vetter.

And while we might have more answers and more treatments, there is still no cure. It's an all-encompassing, complex disease that usually affects people in their 30s and 40s. When symptoms get bad, and people can't work, they apply for government disability benefits. Right now, after that application, there's a two-year wait for benefits. Which is what the HD Parity Act aims to fix.

“HD families are still stuck in this queue and they’re getting sicker and dying every day because of this wait,” says Vetter.

While they can't change the end result, they can help bring quality to everyday life through passage of the Parity Act. It now waits on a new Congress and a new administration. Boland wants it passed and she wants people to know about the disease that took her mother too soon.

“That it exists… what it is and how it affects families,” Boland said.

Like the song her mom once sung when she was a child, Boland says Bonnie is now her "sunshine," a ray of light that she will never forget in her fight for a cure.