Scarlett and I paid a visit to one of our favorite doctors, Dr. Steve Finkbeiner, in his lab last week. Dr. Finkbeiner works at UCSF’s Gladstone Institute and is the inventor of robotic microscopy, which is a huge step for modern drug discovery. He’s also just an all-around nice guy, who lets me stop by and bother him, even when I bring a 4-year-old who is still wearing her fairy costume from that day’s Carnevale party at school.

The first time we visited the lab, Dr. Finkbeiner and I chatted about research developments while Scarlett was spirited away by an assistant to make a “neuron” out of styrofoam and pipe cleaners. This time, she stayed with me in the office, manhandling the doc’s extensive collection of toy brains. He has one real brain in formaldehyde that I think is fascinating, but Scarlett was far more interested in the gooey, wind-up brains, and would not stop touching them.

I asked the good doctor to show me which part of the brain is responsible for impulse control and at what point it becomes developed in children. Short answers: The Front Part and Not Yet.

It is a testament to Dr. Finkbeiner’s intelligence that he can explain how a drug is developed in a way that I can understand EVEN WHILE my daughter is standing next to my chair, saying “EXCUSE ME! EXCUSE ME! EXCUSE ME!” over and over again as a sticky purple brain dangles from her fingertips. An aside: how is that a polite term like “excuse me” can become so incredibly annoying when appropriated and repeated incessantly by a short, loud person?

When Scarlett finally settled down to watch FedEx trucks out the window, the doc and I got into a discussion on the recent debate around GM6 and the FDA. He explained that the FDA was gun-shy on approvals for a number of years because of the scandal around Vioxx, a drug used to treat arthritis and a few other conditions. Approved by the FDA in 1999, it was later discovered that the drug was harmful in many cases, and, more scandalously, that results from clinical trials had been falsified. In 2004, Merck voluntarily withdrew Vioxx from the market, but the FDA had been burned, and it seems to have spent a good deal of time licking the wounds.

Dr. Finkbeiner told me that the FDA has recently come around to a less conservative approach on drug approvals, suggesting that maybe they are over their latest brush with infamy. But—and these are my words, not his—the whole drug approval process needs an overhaul, until we get to a place where urgent means accelerated, and accelerated means fast. Dr. Finkbeiner spoke honestly about the current process. He said that if a drug got fast-tracked before there was a clear understanding of how dosing works, then people could take incorrect doses and suffer serious side effects or death, leading the FDA to pull the drug completely. At that point, it would take far longer to get it into the hands—and nervous systems—of people who could benefit from using it the right way.

I told him I understood, and I do. If I wasn’t an ALS patient, that conservative and safe approach would make sense to me, too. Go slowly, be sure you have it right. But because I am living with a disease that progresses beneath my skin and seeks to shut my body down, I’d rather have the chance to try a treatment than face certain death.

Revisiting the FDA guidelines in general for diseases like ALS would open that fast-track door to all future drugs that show promise. But the key here is that WE NEED DRUGS. (Whoa, total flashback to a night in my friend Amanda’s basement in high school. Ahem.) And a need for drugs and further development means that labs like Dr. Finkbeiner’s need to be funded. ALS TDI needs to be funded. Project ALS needs to be funded. We need to continue raising money for research so that there are drugs to take.

We’re getting closer, and scientists all over the world are hard at work on the problem of ALS. As I’ve written before, it’s widely believed that breakthroughs in ALS research could lead to breakthroughs for other neurological disorders, such as Alzheimer’s and Parkinson’s, that affect millions of people, and are on the rise. This is huge.

Thanks to the Ice Bucket Challenge, the Oscars, and the efforts of people like Steve Gleason, more people than ever before know what ALS is and what it can do. But it’s not enough. I’m channeling Scarlett now when I say EXCUSE ME! EXCUSE ME! EXCUSE ME! Our work here is far from finished. And I’m not shutting up about it anytime soon. I’d really like to be around when my daughter’s impulse control finally kicks in.

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