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Hope Now For ALS (Not me, just sharing)

Posted by on Oct. 8, 2015 at 3:57 PM
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elizabeth –

My name is Amanda Bernier. I am 30 years-old, the mother to a beautiful baby girl, and I may have months to live. Two weeks into my pregnancy, I was diagnosed with ALS. Before my diagnosis, I was running, working in a lab, and volunteering as a firefighter with my husband. Five months later, I was hooked to a ventilator because I could not breathe on my own.

ALS is a devastating disease, and sadly there is no cure, but this has not stopped my family and me from staying positive. Despite being warned that our baby might not make it to full term, I gave birth to our healthy sweet Peanut, Arabella Grace last year. I was also warned I might not be able to breastfeed, but Peanut and I prevailed. 

My family and I have a record of overcoming obstacles with this disease and I need your help in overcoming the next: getting the FDA to apply Accelerated Approvals (AAP) – an expedited approval process to treat fatal diseases – to promising ALS treatments. Unbelievably, the FDA has refused to apply any ALS medications to AAP because the FDA says ALS kills people too quickly to even try. Well, I’ve got too much to lose to not try.

Please join me in asking the FDA to apply Accelerated Approvals (AAP) to promising ALS treatments. 

If the FDA hears a large enough outcry from people like you, we may have a chance at changing this cruel policy. It’s happened before. In 1992, in response to the HIV/AIDS epidemic, the FDA adopted the Accelerated Approval Program (AAP) and this program has been used for cancer and heart failure treatments.If AAP is applied to promising ALS treatments, it is possible that such treatments could save my life and the lives of thousands like me.

Having ALS is not how I pictured my life. It breaks my heart that I can't be the mother that I wanted to be. It crushes me that she might not have me for much longer, and that I might only be in her life as her angel. But I am still here and still fighting. And my only chance may be if ALS treatments are applied to AAP. 

Please sign my petition to save my life and the thousands like me by asking the FDA to allow promising ALS treatments to be included in Accelerated Approvals.

Thank you, 

Amanda Bernier
Hope NOW for ALS
by on Oct. 8, 2015 at 3:57 PM
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