Help Amanda, a young woman with ALS

Hi, I'm Amanda, and I was diagnosed with ALS on October 21st, 2021, just five days before my 21st birthday. Though I had already come to the same conclusion as my neurologist, it was still shocking to hear that you've been diagnosed with a terminal illness with no cure.

Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, is a progressive nervous system disease. The nerve cells in the brain and spinal cord end up deteriorating and dying, which causes a lack of communication with the muscles. They, unfortunately, never regenerate.

I was diagnosed with limb onset ALS, which affects the muscles in my limbs and, with time, will affect my whole body, leaving me paralyzed. In the late stages of ALS, patients face paralysis and need a tracheotomy procedure to breathe.

The average person diagnosed with this disease is a caucasian male in their 60s. As an Asian woman in her 20s, I am an extreme outlier. I am currently the youngest person ever to be in the ALS QUEBEC database. With that in mind, I think bringing awareness to this disease is crucial. Even though it is a rare disease, there are approximately 200 000 people diagnosed with ALS worldwide and 3000 people living with it in Canada alone. I am determined to bring justice to those who have lost their voice from this disease.

Having a terminal illness at such a young age takes away many opportunities to experience what life has to offer. I hope to go to as many countries as possible with the money raised in the upcoming year. My dream this summer is to go to Europe and eventually make my way to Asia. Any help is greatly appreciated.

I thank each and every one of you from the bottom of my heart for your support and contribution. I'm truly grateful and appreciate all the continued help and love.