NJ woman urges Congress to pass ALS bill as she fights for her life – WPIX 11 New York

NUTLEY, N.J. A New Jersey woman is pushing Congress to pass legislation that could be a game changer for people with ALS and other rare, neurodegenerative diseases.

The Accelerating Access for Critical Therapies Act for ALS (ACT ALS) would create a grant program to fund research and allow patients to access investigative therapies outside of clinical trials.

Michele Stellato, an avid volleyball player, first realized something was wrong when she began experiencing stiffness and weakness in her right hand. That was last year. After seeing numerous specialists and going through a battery of tests, she was diagnosed in June with early stage ALS.

She knew it was a possibility, but was stunned when she given the diagnosis. Stellato is just 32 years old.

"There are a lot of misconceptions about ALS," said Stellato. "First, is you need to be old to get this that is not true, I am proof of that, the other misconception is that there is only one type of ALS, there's so many different types and causes, so not one of us ALS patients will look the same."

Amyotrophic lateral sclerosis, or ALS, is a debilitating neurodegenerative condition that attacks cells in the brain and spinal cord. ALS causes patients to lose muscle control, then the ability to walk, talk, eat, move and ultimately, breathe. It's more commonly referred to as Lou Gehrig's Disease named after the New York Yankees legend who died of it nearly 80 years ago.

There was no cure then and there is no cure now.

"The reality is we don't know enough about ALS it's been around for over 200 years but yet, your best guess is really how to treat yourself at this point," said Stellato. "No one should have to hear 'there's not much we can do for you.'"

While ALS is 100% fatal, there are drugs that are already in stage three clinical trials. For patients like Stellato, it is vital to get those therapies. That's why she's pushing for Congress to pass ACT ALS.

"We want hope, we deserve hope and we need help right now from government officials to give us that pathway and that's what this bill is all about, we just want a fighting chance at life right now."

While the ALS community has led the charge for the legislation, ACT ALS also supports people suffering from other rare neurological diseases such as Parkinson's and Alzheimer's, among others.

"Unfortunately, this disease kills people that quickly, we're not able to get enough people in trials," said Stellato. "It takes decades to get a drug where people are dying every day from this. we need to speed this up, change the process."

The bill has bipartisan support. Advocates like Stellato are pushing to get it to the floor for a vote before lawmakers leave for the holiday break.

Every minute counts when you have ALS. According to the ALS Therapy Development Institute, most people with ALS live three to five years after their first signs of disease, but progression varies.

"This bill, I see it as a beacon of hope," said Stellato. "I see it as a chance to fight for my life and for many others."

In the summer of 2014, the Ice Bucket Challenge went viral. It did a lot to raised awareness about ALS, but there's still much more to be learned about the brutality of the condition. ALS affects 30,000 Americans, many of them veterans.

"This is life or death for them they know what's about to happen to them if they don't get treatments," said Stellato. "Give them a fighting chance to get the drug they need."

You can find out more information about how to help here.

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NJ woman urges Congress to pass ALS bill as she fights for her life - WPIX 11 New York