I am Amanda Marmer

Our mother died of ALS over a year ago. She was 75 and had fought the disease for about three years. She had bulbar-onset ALS. The first signs of ALS came in the form of slurred speech. It took about a year to correctly diagnose. In retrospect, it was a blessing to have a year not knowing that it was ALS. She was diagnosed first at [an ALS] clinic by a neurologist, over the phone, while my mom was driving. Not ok. We went to [another ALS clinic] and got a confirmed diagnosis. My mom and dad then moved from Charleston, SC, where there is no ALS clinic, to San Francisco to be closer to me and UCSF. … Anyway, speech and swallowing went first. She swore she would never get a feeding tube, but she did. The feeding tube was challenging in the respect that any time she had an issue with the feeding tube, the clinic told us to go to the emergency room — that is the last place a 73-year-old woman with ALS should have to go. Ugh. After speech and swallowing, weakness was detected in her left arm and then later in her right arm. And some weakness in her back. Weakness in her legs came last. She died peacefully in her home with her dog, her husband, her three daughters, her sister and one of her best friends by her side. She died before she ever made it to a wheelchair. That same year, I also lost a great friend to ALS at the young age of 40. She was an amazing woman and provided me, my family and my friends with such strength. This disease is devastating. After raising a ton of money for [ALS organizations], I have taken a break from fundraising and ALS in general. After losing my mom with little hope or progress made in the world of ALS and still reeling from the consumption and sadness of the disease, I needed to step away. But, my brother-in-law told me about I AM ALS. I am so inspired by Brian’s story and by his and his wife’s deep commitment to finding a cure. We need one!