Her body is breaking down but her heart is not giving up.A mother from Mason who has been battling ALS for three years is taking her battle to Washington, D.C., pleading with lawmakers and the Food and Drug Administration to give her and others "a fighting chance.""I want people to know that if you haven't known anyone with ALS, you will," Patricia Manhardt said.Manhardt was diagnosed with ALS in 2020 but was still walking at the time. Six months later, she was in a wheelchair. Now, almost three years later, Manhardt struggles just to breathe."It's a horrific disease. We lose our ability to move. We're paralyzed and then we die," Manhardt said.As difficult as it is to travel, Manhardt and dozens more facing the same fate wanted to be in Washington to be heard.They refuse to die in silence."Living life with ALS is a little bit like losing a little piece of yourself, slowly, day by day," Tim Tobin said.Tobin is one of the thousands of patients begging the FDA to grant access to trial drugs that have not only helped patients in clinical trials but have reversed the symptoms.They say the drug "nurown" is a game changer."I think it's shameful if they're not going to be looking at the real-world impacts of the drug and the testimony of patients about how it has impacted them," Tobin said.Tobin and Manhardt said without the FDA and lawmakers helping, they are at war, all alone.So they will take the risk that comes with any drug, because they know the alternative. They are fighters, who just want a fighting chance.Manhardt was able to meet with Ohio Sen. J.D. Vance, Congressman Brad Wenstrup and a member of Sen. Sherrod Brown's staff.She said all of them were very supportive.The question now is if it will have any impact on the FDA.
Her body is breaking down but her heart is not giving up.
A mother from Mason who has been battling ALS for three years is taking her battle to Washington, D.C., pleading with lawmakers and the Food and Drug Administration to give her and others "a fighting chance."
"I want people to know that if you haven't known anyone with ALS, you will," Patricia Manhardt said.
Manhardt was diagnosed with ALS in 2020 but was still walking at the time.
Six months later, she was in a wheelchair.
Now, almost three years later, Manhardt struggles just to breathe.
"It's a horrific disease. We lose our ability to move. We're paralyzed and then we die," Manhardt said.
As difficult as it is to travel, Manhardt and dozens more facing the same fate wanted to be in Washington to be heard.
They refuse to die in silence.
"Living life with ALS is a little bit like losing a little piece of yourself, slowly, day by day," Tim Tobin said.
Tobin is one of the thousands of patients begging the FDA to grant access to trial drugs that have not only helped patients in clinical trials but have reversed the symptoms.
They say the drug "nurown" is a game changer.
"I think it's shameful if they're not going to be looking at the real-world impacts of the drug and the testimony of patients about how it has impacted them," Tobin said.
Tobin and Manhardt said without the FDA and lawmakers helping, they are at war, all alone.
So they will take the risk that comes with any drug, because they know the alternative. They are fighters, who just want a fighting chance.
Manhardt was able to meet with Ohio Sen. J.D. Vance, Congressman Brad Wenstrup and a member of Sen. Sherrod Brown's staff.
She said all of them were very supportive.
The question now is if it will have any impact on the FDA.
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