My oldest child was four when my dad passed away from ALS, and my youngest was just barely two weeks old.
Fast-forward to the present, my youngest is less than six months away from turning four.
One of my children has memories.
One of my children is told memories.
The ALS community deserves a chance to make memories. When we as a community are asking for the FDA approval of the medication, specifically in this case AMX0035, we are asking for a chance to make one more memory, a chance for one more story, one more laugh, one more walk around the block.
We are asking for a chance at one more moment in time where we can create a memory together.
Those with ALS have already fought. They fought to be diagnosed; they fought to be heard, and they fought for a diagnosis. They received one, and guess what? When most people would give up, patients and families with ALS fought harder, not only for themselves but for the community.
Now, we are asking for you to fight for them too.
Fight for the child who wants their dad at their music recital this year.
Fight for the wife who wakes up every morning hoping to get through the day without dropping her husband while transferring him.
Fight for the grandson holding on to the lyrics of a song, desperately hoping the good memories erase the bad.
As my youngest approaches his 4th birthday, I am reminded of the difference between the first four years of my children’s life.
My oldest watched ALS take away his Papa. Those are his memories
My youngest waits for the cardinal to land in our yard, which we call Papa Bird. We have created these memories.
I hope that together they will be able to create the memory of the FDA approving more medications to give other families a chance at more moments together.
I am hopeful that together we will all have the memory of the FDA fighting for the ALS community just as hard as they fight for themselves, just as hard as they fight for each other, and just as hard as they fight to show the world the importance of the fight.