About a month ago, Rob and Scarlett and I received a really wonderful visit from another family who is dealing with ALS. This was particularly special, because the woman, Meg Macdonald, grew up in my hometown of Oak Park, Illinois, and went to high school with my Aunt Carolyn. Meg and her family now live in Reno, and she comes to San Francisco for regular clinic visits at UCSF. Meg was also a top fundraiser in the #whatwouldyougive campaign, bringing in nearly 15K.

I’m not always able to get together with the people who reach out to me, but I really wanted to meet Meg and told her I would rearrange anything necessary in order to make it happen. We had a busy weekend, and the only time we could really figure out to see each other was Friday night, right after Meg’s clinic appointment, the first one her 15-year-old son Andy had attended.

Meg, her husband Stan, and Andy arrived around 6, looking much happier than I’m sure I normally look after a clinic visit. We ordered Thai food, drank wine, sat and talked. I offered Andy a glass of wine, because something is wrong with my brain. He drank a soda. Meg uses her phone and a tablet to communicate, and she didn’t have any Thai food, because she eats through her feeding tube. Though she’s only had ALS officially for a few months, she is sadly well-versed in the disease, having lost her mother, aunt, and cousin to it. Read More>