By Stephanie Stahl

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PHILADELPHIA (CBS) — Patients with ALS are desperate for access to an experimental drug. ALS is a dreaded disease that is quickly fatal, but there’s hope research on a stem cell therapy can restore lives.

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One patient, who lives outside Harrisburg, says that hope is clouded with disappointment and frustration.

“I’m very fortunate, that’s why I fight,” Annie Swartz said.

Swartz has had ALS for 10 years and is still walking and driving. She’s beating the odds for now, but knows the nervous system disease named after Lou Gehrig will eventually paralyze and kill her.

“The devastation is relentless, the disease takes each involuntary muscle,” Swartz said.

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Her arms and hands are getting weak, but braces are helping for now. And even though it’s too late to help her, Swartz is fighting for ALS patients to have easier access to drugs that might help.

“Why don’t we matter like everybody else?” Swartz asked.

Swartz and other ALS patients recently met with FDA representatives pleading for help. They have high hopes for an experimental treatment called NurOwn by Brainstorm Therapeutics.

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“There are patients that are getting better on this trial,” ALS patient Mark Bedwell said.

Bedwell, who was with Swartz at the FDA meeting, says NurOwn has changed his life.

“It was hard for me to walk, hard to talk, I’m very emotional about it,” he said. “It works, I’ll run around the building with you.”

“This drug is everything,” Swartz said. “This is the first time in history that we feel hope and promise.”

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She thinks more patients should have the drug, especially considering the new Right To Try law that allows terminally ill patients to get experimental therapies, but only one ALS patient got NurOwn as a result of that legislation.

“We have a bill that we can’t access, that we can’t benefit from,” Swartz said.

Eyewitness News didn’t hear back from the drug company, but experts say there could be issues with the cost in terms of giving it to patients. And it’s still in clinical trials, to make sure it’s safe and effective.

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Swartz is disappointed that the FDA has delayed any action on those requests from ALS patients, and she also says, in terms of the money being raised for ALS, more should be directed to funding research.

Stephanie Stahl