Tag Archives: ellen degeneres

Speed4Kari

I’ll keep the post short today, because I’m introducing a new Face of ALS. It’s never easy to do this (do I say that every time?) but this one is really hard. Kari Robben is 28. She has three little kids.

HOW DOES THIS DISEASE STILL EXIST? It’s medieval. It should be a joke. It should have some kind of treatment, some measure of hope. It should not be allowed to promise that more kids will lose their parents.

I guess lately I take everything back to the #whatwouldyougive campaign, but it’s stories like Kari’s that are the reason we need more action and attention.  Yesterday was a really good day for the campaign. It was ALS activist Michele Dupree’s birthday, and all she asked for was that people donate to her #whatwouldyougive fundraising page, while she used an Eye Gaze device to communicate all day. More than $1,300 later, Michele is one of our top fundraisers, and I’m guessing she had a pretty good birthday.

Then the publishing company I used to work for started a team and donations came rolling in. In one day, they became our 6th highest fundraiser, also with more than $1,300. It feels like there’s a lot of support and power behind this, and that helps to balance the sadness I felt when I first heard Kari’s story.

Kari herself is resolved. She reached out to tell me about her efforts to raise awareness of this disease that was so new to her. She wants to challenge Tim McGraw to dump ice on his head in August. She’s contacted Ellen DeGeneres. “I keep telling myself, little ripples make BIG waves,” she wrote in one email.

She was diagnosed so recently; there really is time for her to beat this thing and spend the rest of her long life with her beautiful family. What would you give to make that happen? 

Read Kari’s story here.