Thus far, I’ve taken 2017 off from dedicating races to people with ALS and writing race reports. It just became too much with all the other writing and non-writing projects I’ve had on my plate.
But I’ve missed it. The project gave me an extra shot of encouragement and determination when I got tired, or bored, or cold. I would remember the strength of the person I was honoring – and how much of an honor it was even to be doing the race at all – and I’d perk up.
So I’m starting it up again. This time, I won’t write separate Parts 1 & 2 with profiles and race reports. Every race is different and special to me, but it’s tough to write about 13.1 or 26.2 miles of triking in ways that would be interesting for anyone else to read. So for my final 6 races of the year, I’ll just write about the people with ALS that I choose to honor.
(And yes, I am on track to do another 12 races this year. The first 6 were: the St. Pat’s Run 5k + 10k in DC, Emerald Isle half marathon, Rock ‘n Roll Raleigh half, Spartan half in Davidson, last 9 miles of the Tri-State Trek, and the Darden Towe 10k in Charlottesville).
Tomorrow, I’ll be doing the Rock ‘n Roll Philadelphia half marathon as part of the Augie’s Quest team, aka Team Quest4ALS. You may have heard of Augie’s Quest earlier this year when they partnered with OrangeTheory Fitness and raised $2 MILLION in 2 weeks for ALS research.
Last year, Augie’s Quest raised $400,000 at Rock ‘n Roll Philadelphia. I had planned to participate, but the race wouldn’t allow the trike – I could be pushed in a chair, but I couldn’t pedal myself. #outrageous
Thanks to the persistence of people like Angel at Augie’s Quest and Dileep at ALSA-NC, that’s not a problem this year. So DP and I are back in his hometown this weekend and excited to meet up with our ALS family for a pasta dinner tonight before the race.
So who is Augie? Augie Nieto is the Board Chairman of ALS TDI who has been living with ALS for 12 years. Before his diagnosis, he founded the ubiquitous LifeFitness brand of workout equipment, which I know you’ll recognize if you ever lift weights or run on a treadmill at your local gym.
As everyone diagnosed with ALS is, Augie and his wife Lynne were incredulous to learn at the slow pace of research towards a cure. took the ferocious determination he’d used to build his fitness empire and . . . pivoted.
He found like-minded frustration-combined-with-ambition with the Heywood family, who were in the process of launching a radical new model for ALS research – a nonprofit research lab in Cambridge, MA called the ALS Therapy Development Foundation (which of course is now ALS TDI) – in a desperate attempt to save their brother Stephen’s life after he too was diagnosed with ALS at the age of 29.
So the Nietos and the Heywoods joined forces. While Stephen’s brothers focused on getting the lab up and running on the East Coast, Augie rallied the fitness community to support the cause on the West Coast. Eventually, Augie’s Quest and ALS TDI merged more formally, but retain their own identities.
[Bringing this story full circle, last year I was honored to receive the Stephen Heywood Patients Today Award from ALS TDI, 10 years after it was awarded to its first recipient…Jon Blais.]
Fast forwarding to today, Augie’s Quest has raised more than $45 million for ALS research.
Now, THAT is an example of making your remaining time count after being diagnosed with ALS. It also lives up to the subtitle of his book, Augie’s Quest: One Man’s Journey from Success to Significance.
Augie is still with us. After 12 years, he is mostly paralyzed, but he still works out the muscles he can — including riding a TRIKE!
I know I’ll be thinking about that^ video as well as this one, which I once shared on FB with the following caption:
“If he can do this, you can do ___________.”
Rock on, Augie.