Too Beautiful

150K, people. That is what we have raised through the #WhatWouldYouGive campaign. It’s amazing. The idea was that the campaign would run through August, but we are going to keep it rolling, because no one in their right mind turns down money for a cure. We’ve also seen some late additions to the team, and feel like the fundraiser is still full of momentum. I want to thank all of our team members for their incredible efforts throughout the summer; we absolutely couldn’t have done it without you. For our new team members, and those still actively fundraising, a big thank you to you for joining and being a part of the inevitable end of ALS.

I also owe thanks to our more than 1500 donors, who gave selflessly and generously. My family and I are very happily overwhelmed by all of the support and empathy that you’ve brought to the cause. It’s true that right now there is no effective treatment for ALS, but I’m not exaggerating when I say that reading the notes from donors, both those I know well and love, and those I’ve never met, has definitely made me feel stronger and more able to stay positive.

In the realm of other things that make me happy, Read More>

|Categories: Life, Parenting, Relationships, Vanity, Venting | Tags: , , | Permalink

A Beginning

Scarlett starts first grade tomorrow. I’m very excited for her, even though the only thing I remember about my own first grade experience is when my friend Beth and I made circles of glue on our desks and decided we would sell our tiny treasures for five cents each. We saw ourselves as entrepreneurs, but our get-rich-quick scheme was foiled when it turned out there was no market for dried discs of Elmers. Other things must have happened in first grade, but that’s literally all I’ve got.

I haven’t felt much like writing; there seem to be so many other things going on, and I’ve spent the last two days of summer vacation with Scarlett, sometimes arguing, sometimes exploring, sometimes just me watching her. I know she looks older, because other people keep saying so, but I don’t really see it myself. It’s sort of how I think I still look the same, even though I’m technically aware that I’ve changed significantly as a result of ALS. My daughter is taller. I’m growing gaunt, the bones under my skin jutting out like poorly concealed weapons. In my mind, though, we are both pink cheeked and strong. Read More>

|Categories: Life, Parenting, Progression | Tags: , , , | Permalink

Social Influence

Last Friday, Scarlett and I went to visit Rob’s office. He took a new job in April, at a start-up called Linqia in San Francisco’s Union Square neighborhood. We hadn’t seen his workspace before, and we were excited to meet his coworkers and see where he spends his days.

The main reason we were there was that Rob was rolling out the #WhatWouldYouGive campaign and asking his company to get involved. We gathered in the conference room, where Rob talked to a large group about the genesis of our fundraiser, and how he hoped to impact awareness through a “day of silence” at Linqia.

While he spoke, Scarlett held court in the corner, crawled around under the conference room table, pulled apart the protective covering on a few chairs, and ate an alarming amount of  bread and cookies. Read More>

|Categories: Cure, Life, Relationships, Research | Tags: , , | Permalink