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Benefit set for Ken West grad diagnosed at 19 with ALS

Friends and family will hold a benefit for Ben Cambria, a recent Kenmore West High School graduate who was diagnosed last year with amyotrophic lateral sclerosis (ALS), on Sunday, Oct. 1 in the Town of Tonawanda.

Cambria, 20, was among the first in the country to participate in groundbreaking medical treatment designed to slow the progress of ALS, also known as Lou Gehrig's disease, a neurodegenerative disease in which a majority of patients die within three to five years, according to the National Institute of Neurological Disorders and Stroke.

DENT Neurological Institute in Amherst was the first to begin administering the newly FDA-approved medication, which Cambria began receiving last month. The drug, Radicava, is the first ALS-specific treatment approved in 22 years and "gives hope" to ALS patients, according to the Amherst treatment center.

But the intravenous treatment, which costs nearly $140,000 a year, is not a cure and Cambria will have to continue receiving the medication on a regular basis for life. He plans to continue receiving the medication at the Albany Medical Center while he attends the University of Albany, where he is a junior majoring in accounting.

The fundraiser is scheduled from 1 to 5 p.m. at the Elwood Fire Hall, 1000 Englewood Ave.

Fundraiser co-sponsor Maureen Donnelly said there will be raffle items, including Sabres tickets, Bills paraphernalia and a big screen television, as well as more than 200 baskets. Tickets to the event are $20, $10 for students with student ID. For ticket information, contact Donnelly at 225-5741 or Debbie Buyers at 480-7390.

In addition to the fundraiser, friends and family also have raised more than $34,000 in a "Band Together for Ben" GoFundMe account.

Cambria's mother, Becky, called the support from friends who are raising money for the family "very overwhelming."

"My son is just like any other 20-year-old, and they are trying to make his dreams come true," said Becky Cambria.

She said her son receives the expensive medication five days a week with a two-week break after every four-week cycle. Each treatment takes more than an hour.

"It's a challenge, but he has accepted the challenge," said his mother. "It's not a cure, but hopefully it will slow down the progression dramatically."

ALS usually strikes people who are between the ages of 40 to 70. Cambria's paternal grandmother, Elaine Cambria, a retired kindergarten teacher had the disease. She died this past February, just nine months after being diagnosed with the hereditary disease.

Cambria began suffering stiffness in his hands and feet at the end of his freshman year, said his mother. He was diagnosed by a neurologist in July 2016. Becky Cambria said it is very rare, about .003 percent chance, of being diagnosed with ALS at her son's age.

"(Ben) is the first one in the nation to have (this treatment) and the fact that he is so young is beneficial to the medical community. They will be able to monitor and see what the effects are," she said. "But every ALS patient is different."

Becky and her husband, John, have six children. Ben and his brother Alexander are one of two sets of twins in the family.

"ALS doesn't affect just one person, it affects the whole family. We are a family with ALS," she said.


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