September 25, 2021
With the gracious help of Gregg Gonsalves, this document, "Five Things That Will Change Everything," was presented to NINDS Director Walter Koroshetz, MD, and a meeting was requested. The meeting request was accepted almost immediately.
October 20, 2021
The Problem Solvers met with Drs. Koroshetz, Gubitz, and Schor and six other top NINDS officials via Zoom. After a short presentation, we discussed how we might move forward with purpose and speed to co-produce these five cogs, these five solutions, that will change everything. Some cogs will be harder than others, but even in the Zoom chat we saw a concrete idea to expedite a natural history study by leveraging an existing asset. The ALS Problem Solvers were accepted as partners in the process.
A top NINDS leader commented that the ALS Problem Solvers had presented the perfect mix of science and human experience.
The ALS Problem Solvers have been given contacts among the NINDS participants to follow up in pursuit of four of the five cogs. We feel that the fifth cog, Our Relationship, literally started turning on October 20, 2021.
This was an historic moment that directly brought people with ALS and caregivers to be intrinsic parts of the scientific progress that NINDS can affect.