Tag Archives: als tdi

Good Things

I take lots of notes on my phone to remind me of the things that I’m planning to write about. But sometimes I think I overestimate my ability to understand my own shorthand. For example, I have a note for today that just says Relativity. That’s what the blog is supposed to be about, but I have no idea what it means or even if it’s actually the word that I wrote and not just some autocorrection.

Relativity.

Yep, just checking. I have nothing to say on that topic.

Some good things have happened lately, so maybe I should write about those things. I finished a New York Times Sunday crossword puzzle without cheating. I made it through the entire morning of no school without yelling at Scarlett or Otto. Wait, nope. I did yell at Otto, because he was eating all the plants in the backyard. He deserved it, so that doesn’t count.

And I won an award, which happened a little while ago, but I realize I haven’t really acknowledged it yet. It’s a leadership award from ALS TDI, the main organization that my family and I support since we feel that they share our sense of urgency around developing treatments and a cure for ALS. Read More>

|Categories: Cure, Drugs, Faces, Relationships, Research | Tags: , , , , , , , , | Permalink

Why would you give?

When I first started talking about the idea for the #whatwouldyougive campaign, it was met with a lot of enthusiasm. The only hesitation that people seemed to have was that it was a little depressing. Would anyone want to give up an ability for a day, or even for an hour? Why would someone want to spend (waste?) their time in that way?

These were good questions. Our previous fundraisers have been bike rides and walks, activities that people could train for, things that they could feel good about. And even though I had fun at the first bike ride we did, it didn’t escape my attention that we were all gathering to participate in an activity that wasn’t possible for me. One group, including my husband and many other friends, road 100 miles. It took them 8 hours. So they spent the day together, biking through the gorgeous Napa Valley, while I stayed back at our tent, meeting people and hanging out with other amazing friends, some who had traveled across the country to join our effort. I have no complaints. But I wanted to create a fundraiser that raised more awareness about the realities of ALS.

When I talked to friends about it, I acknowledged that it’s easier (or at least more fun) to train for a bike ride or run. I understood that they might think they couldn’t do this for a few hours, or for an entire day. But that is exactly the point. ALS doesn’t care what’s convenient. It doesn’t care if the timing works for you. Right now I’m dictating this blog into a headset, and it’s hard (my first effort at that sentence resulted in “Right now I’m defeating the slot into a headset.”) I’m supposed to read as though I’m an anchorwoman, reporting the evening news. Read More>

|Categories: Cure, Drugs, Life | Tags: , , , | Permalink

Brain Power

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. Read More>

|Categories: Cure, Doctors, Drugs, Research, Venting | Tags: , , , , , , , | Permalink