Tag Archives: faces of als


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>

Vivian and Christina

Today I was planning to introduce a new Face of ALS, but first, I have to acknowledge some sad news, which is that my friend Vivian Connell died of ALS yesterday. I’ve written about Vivian before, and you can read about her here and here and here. Her family wrote on Facebook that she passed away peacefully and that they felt both “an unbearable sadness and an overwhelming relief.” I also feel a deep sense of sadness, and a pretty healthy dose of anger. I never met Vivian in person, but she was a good friend of mine. Wise and real, principled and generous. I’ve spent the morning thinking about her, and about her husband and two children. Although her death was not unexpected, I find it hard to comprehend, as though she is still sitting there in her home in North Carolina, doing important work, and occasionally standing up and stretching when she needs a break. Because the really weird thing is, in my mind I never pictured Vivian to be sick. Her words never made her seem that way, and her beautiful smile is all I can see. I’ll keep her like that in my memory, and she and her family will be in my heart.

As I say goodbye to Vivian, I am saying hello to another person who shares our disease. Read More>

Video blog!

From ALS TDI’s 11th annual Leadership Summit last month.