Im a new mom and Ill die from ALS

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Published on Sunday, 25 October 2015 09:30
Written by editor
r1 ...

PAOV – There's a new petition taking off on Change.org, and we think you might be interested in signing it.

Give Terminally Ill Patients Access to Life Saving Drugs

Hope NOW for ALS Sign the petition

A message from Amanda Bernier:

My name is Amanda, I’m 30 years old and a new mom. It crushes my soul that my baby won’t have her mother for much longer and she will grow up without me. Just weeks into my pregnancy I learned that I had ALS – at age 29! I went from running races, working in a lab, and firefighting to not being able to move anything but my head and on a ventilator in 5 months.

ALS is a devastating disease, that currently has no effective FDA approved treatments. However, there are promising therapies in the FDA approval pipeline that might improve my chances and quality of life, but the FDA isn’t willing to expedite the approval of these drugs, even though the average life expectancy of an ALS patient is 3-5 years and the average time it takes for a drug to become FDA approved is over a decade.

Please join me and Hope NOW for ALS in petitioning Congress and the FDA to apply Accelerated Approvals (AAP) to promising treatments targeting terminal diseases, and implement faster, smarter, and more humane clinical trials using today’s science.

This is not a radical or new idea. In 1992, in response to the HIV/AIDS epidemic, the FDA adopted the Accelerated Approval Program (AAP) – an expedited approval process to treat fatal diseases. This was a process to allow patients fast access to potentially life saving drugs, and has since been used for cancer and heart failure treatments. But the FDA refuses to apply it to ALS and other rapidly fatal diseases.

How can it possibly be fair to exclude the most vulnerable and at risk people -- those with fast acting terminal diseases -- from this program? ALS is always fatal, and there are currently over 30,000 patients in the US with no options. We need help. We need options.

Please join me and Hope NOW for ALS to help save my life, and the lives of so many others around the country.

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