This is an ALS Story.
It happens to be my story. But it could be your story. Your spouse’s story. Your child’s story.
I was diagnosed with ALS in November 2017. I was 37.
With two girls under three. And I was told then that this disease will take my life. Rob my daughters of their father. And my wife of her husband.
That, however, is not how my story will end. Why? Because, together we are going to cure ALS.
The first time I heard the words “ALS” from my doctors was on August 14, 2017. As those words crashed around her office, my family and I asked questions. Trying desperately to make sense of this diagnosis.
Wasn’t I too young to have ALS? How could I have it if we have no family history of ALS? Aren’t there parts of my symptoms that suggest something else, anything else?
The answers didn’t come that day. There is not yet a test to diagnosis someone with ALS. Instead, it is a diagnosis that is reached when all other options are exhausted. What doctors call a diagnosis by exclusion.
And as we were waiting for that diagnosis we read everything we could find about ALS.
Let me start with the punchline: there is no cure right now for ALS.
Every 4.4 minutes someone in the world is diagnosed with ALS.
Every 4.4 minutes someone dies of ALS.
In the time it takes you to read this document someone’s son will have been diagnosed with ALS and someone’s mother will have died from ALS.
ALS is a disease that turns your body against itself. It causes your body to attack itself. To wear out its muscles until you can no longer move your hands. Your arms. Your legs. Eat. And ultimately breathe.
Lou Gehrig had ALS. So did Stephen Hawking.
So do nearly 500,000 people around the world.
One out of every 500 Americans will be diagnosed with ALS. Those diagnosed are young and old, male and female, and every skin color.
ALS doesn’t discriminate. It can affect anyone.
90% of the people diagnosed with ALS have no family history of ALS. 90%
On average, they will live 2 to 5 years after being given this diagnosis.
So this story, my story, is actually our story—because if ALS can affect anyone, curing it takes everyone.
The good news is that our story can have a happy ending.
That’s because ALS is not an incurable disease; it is an underfunded one. Indeed, even though ALS research is badly underfunded, researchers are closer to finding a cure than ever before having identified over 40 genes connected to ALS.
In fact, the tools are in place to defeat ALS. The ALS community has the necessary building blocks of a movement for a cure: patients, advocates, and organizations striving for new recognition, new commitments, and new breakthroughs. They remain hopeful, driven, inspiring and inspired.
What is missing from the fight right now is a patient-led, patient-centric movement that can empower those in the fight and bring those not affected by the disease into our struggle.
So that’s what we have built with I AM ALS.
A patient-led, patient-centric movement that will drive collaboration, build and provide critical missing resources for the ALS community, organize and empower the ALS community, and drive increased awareness of ALS in order to generate millions of dollars in new funding to accelerate finding a cure.
Thank you for joining us—the patients, caregivers, advocates, and doctors at the helm of I AM ALS—in this fight. As I sit here typing these words, I am filled with hope because I truly believe that I will live to see a cure for ALS. A cure that will allow me to raise my girls with my wife. To be there for the father-daughter wedding dance. A cure that will change the lives of tens of thousands by ensuring that no patient ever has to be told, “you have ALS, get your affairs in order.”
We will win this fight, and when we do we will unlock critical breakthroughs that will help defeat Parkinson’s, Alzheimer’s, Frontal Temporal Dementia, and beyond. Saving the lives of an estimated 135 million people who would have been killed by these diseases.
This is our dream at I AM ALS. Like all dreams it is reality mixed with hope. We will find a cure. That part is the reality. The dream is doing it in the next three years, not in 20 years.