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 Our Her ALS Story sister, Alyssa Jeswald Lee, passed away in November. Today is her Celebration of Life. Here is the HAS remembrance that will be read at her service. We will be hosting an Alyssa Day at our retreat next September. Donations gratefully accepted here. We (the filmmakers, DP…

“Send card to Kyle” has been on my perpetual weekly to do list since September when he Tweeted this photo: I was beyond touched. A tattoo matching mine, 7 swallows for 7 years with ALS, with his own twist honoring his brother’s wedding to a man. I update my to…

Well, here we are: 7 years to the actual day when I was diagnosed with ALS (though we didn’t understand what doctor was saying at the time…). It seems like a good day to take stock. Two years ago, when I reached 5 years living with ALS – a milestone…

My mom asked the other day if I cared if people knew how old I was. I believe I said something like, “Hell no, I’m supposed to be dead by now.” And that pretty much sums up how I feel about turning 40. Amazing what a shift in perspective will…

Today was supposed to begin our epic journey to Alaska with a stopover in Olympia, WA for Marathon #20. We would have spent the following week in Ketchikan and Prince of Wales Island, sightseeing and speaking to schools leading up to the POW Marathon, which would be Marathon #21 and…

via FB, from Alison Kelly   I hate writing these posts; another friend gone too soon. This one wasn’t from ALS, it was a fast-acting bacterial infection. That doesn’t make it hurt any more or less, but differently. Friendship with ALS comes with the expectation of loss. Chris Kochtitzy’s passing…

I’m overwhelmed with gratitude by the heartfelt notes I have received about my recent FB post. Hearing from so many people I know from different corners and eras in my life reminded my how truly blessed I have been to get to know each of you – many people that…