Tag Archives: faces of als

Speed4Amy

I’m just going to keep doing this, people. Keep introducing you to individuals and families dealing with the ALS monster. I’m not stopping until I can walk again, and if that happens I’m going to be way too busy WALKING AROUND SINGING to bother all of you about a disease that was finally, blessedly cured.

But for now…

Amy Janisse is a young mom from Michigan, and she is the newest Face of ALS on the site. Amy and I connected through Facebook, and she is yet another reason that I no longer whine about the social networking service. Read More>

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

Speed4Flora

Rob and I were making our exit from the ALS TDI White Coat Affair gala in November, when we were flagged down by three women sitting together at a round table. Two of them were ALS advocates, and they were leaning in towards a third, a really lovely woman named Flora Fasolya, who was there from New York. One of the women, Michele Dupree, explained to me that Flora had been diagnosed about a year earlier, and that she needed to talk to someone who understood some of the physical difficulties she had been having.

We talked for a little while, Flora asking questions about how Rob and I manage certain parts of our day in an attempt to learn how she and her boyfriend, Chris, can adjust to their new life with ALS. I know Flora spoke with many of the other people at the party that night, too. She was gathering information, something that everyone with ALS should do. Even if no one knows exactly what to expect from this disease, and when, we can absolutely learn from each other’s experiences. Read More>

|Categories: Diagnosis, Life, Progression, Relationships | Tags: , , , , | Permalink

Speed4Vivian

Today I added a new Face of ALS to the site. I hate doing that, hate that there are new faces of ALS, all day every day. But I am also incredibly grateful when people want to share their personal stories. It’s the most important thing we can do to continue the focus on this disease and how it is affecting lives.

There are no good stories of people getting ALS, but Vivian Connell’s seems notable in its irony. She went back to school in her 40s so that she could launch a second career and continue her good work in the world. (I don’t have an advanced degree, but word on the street is that this kind of endeavor can be pricey.) Vivian was diagnosed with ALS less than a year after graduation. Yet, as you’ll read, she has not let it define or deter her. She is an excellent example for her two teenagers and for the rest of us.

You can read Vivian’s story here, Read More>

|Categories: Diagnosis, Life | Tags: , | Permalink