I am Karen Madrigal
a family member of someone living with ALS,
a family member of someone we've lost to ALS,
an ALS gene carrier
So far, I’ve lost 3 brothers and my baby sister has ALS.
I’m tired of watching my siblings die one by one. So far, I’ve lost 3 brothers and my baby sister has ALS. I have the C9orf72 gene for familial ALS. If my sister had access to Nurown, she would likely not be in a wheelchair breathing with a bipap machine.
I spend at least an hour every day reaching out to my government representatives and researching therapies. Is it too much to ask that drugs may be given to dying people?