Thank you Sam Stein – I deeply appreciate your writing about Brian Wallach. A beautiful story about a good man, great accomplishment, and a thoughtful approach to death. I am 90, I think about it from time to time.
I was 37 at the time. However, my ALS story will not have a typical ending. How can I say that? because of you. With you and me, we will cure ALS.
This is an ALS story. This happens to be my story. But this might be your story. Your spouse’s story. Your child’s story.
There are two girls under the age of three. I was told then that this disease would take my life. Rob my daughter’s father. And my husband’s wife.
However, this is not the end of my story. why? Because, together, we will cure ALS.
The first time I heard the word “ALS” from a doctor was on August 14, 2017. My family and I asked questions as the words rang in her office. Desperately trying to figure out this diagnosis.
Am I too young to get ALS? If we don’t have a family history of ALS, how can I have it? Don’t some parts of my symptoms suggest something else?.
There was no answer that day. There is currently no test that can diagnose people with ALS. Instead, it’s a diagnosis when all other options are exhausted. Doctors call this a diagnosis of exclusion.
While we waited for a diagnosis, we read everything we could find about ALS.
Let me start with the punchline: There is currently no cure for ALS.
One person in the world is diagnosed with ALS every 4.4 minutes.
One person dies from ALS every 4.4 minutes.
By the time you read this document, someone’s son will be diagnosed with ALS and someone’s mother will die of ALS.
ALS is a disease that turns your body against itself. It makes your body attack itself. Exhaust its muscles until you can no longer move your hand. your arms. Your leg. eat. And finally breathe.
The good news is that our story can have a happy ending.
That’s because ALS is not an incurable disease. This is an underfunded problem. In fact, despite woefully underfunded ALS research, researchers are closer than ever to finding a cure, having identified more than 40 ALS-related genes.
In fact, these tools are already in place to defeat ALS. The ALS community has the necessary components of the healing movement: patients, advocates, and organizations striving for new recognition, new commitment, and new breakthroughs. They remain hopeful, motivated, inspired and inspired.
What’s missing from the fight now is a patient-led, patient-centred movement that can empower those fighting and bring into our struggles those unaffected by disease.