The following essay was originally posted on Facebook post by Juan Reyes, a veteran living with ALS and co-recipient of this year’s Stephen Milne Adventurous Spirit Award. It has been reposted here with his permission. To learn more about Juan and this years’ other ALS TDI Leadership awardees, click here.
Hard core science has no heart, it is cold and methodical.
Perhaps, the environment and theories – definitely. You may think the people are, maybe some but not all. Wait until you walk through the doors of ALS Therapy Development Institute (ALS TDI). A small non-profit laboratory undertaking a monumental feat… Ending ALS.
The first thing you will notice are photos, not of the staff or corporate heads, no. You will be greeted by images of individuals and families. The staffs’? No. You will be welcomed by images of the lives they dedicate their tireless work to. Past and present ALS afflicted families.
Throughout the building you witness in snapshot after snapshot, the smiles, love, and support the staff are surrounded by. A constant reminder of the human urgency driving their dedication.
But what does ALS TDI do? I am not a scientist, so I won’t even attempt to try. I will say the following though. They conduct advanced preclinical ALS therapy (treatments) development and research. This of course is an oversimplified description. What they really do is the stuff straight out of a SciFi movie! And I believe that they have discovered an anti aging serum. Have you seen the staff, they don’t age.
I’m being silly, of course. But I will tell you what they accomplish, in my own words. They are very successful, IMHO, at translating the urgency of the ticking ALS clock into perceptible advancements in therapy development. The key word is “perceptible ”. These advancements are in the molecular realm, scientifically speaking. We the general public are superficially aware of the advancements. They are difficult to grasp, at least for me: mice, fish, and genes, oh my! We’re off to see the wizards of ALS!
Having attended the summit, last week, I can share that I now understand better, I think? These leaps in science, although in the electron microscope realm they appear miniscule. Are in fact quite monumental outside of the nano-sphere, and they will astound you.
On the other hand, connecting the hard core science to the human experience and condition is the unexpected result of this experiment in curing the incurable. This is the magic that can’t be captured in the microscope, algorithms, or the data points on a graph. This can only be felt.
From the moment you walk through their doors you know you are in the presence of hope. This is where hope is cultured, plated, and magnified through the dedicated hearts and minds of the family at ALS TDI.
What to do next: