Category Archives: Faces

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.

|Categories: Cure, Diagnosis, Faces, Research | Tags: , , , , | Permalink

Speed4Kevin

In 2013, I was connected to Kevin Swan, a young filmmaker from Florida, who also has ALS. Kevin and I made a phone date, and quickly found that we had similar attitudes to living with the disease, mainly that we were looking to stay positive and to focus on what was good in our lives.

Part of our conversation centered around the idea that we really feel lucky to have been given the new perspective that we have, with enough time to actually put it to use. We meant this in comparison to having your life snuffed out in an instant, never having the chance to tell people you loved them that one last time. Sure, we all know that life is fleeting and that we’ll someday die, but until you’re facing it in a more immediate way, it’s hard to wrap your head around the concept. I’ll never have everything about this life figured out, but having ALS has helped me to pare away some of the extraneous bullshit and think about the best ways to spend my time.

Kevin decided that his time would be well spent by starting A Life Story Foundation, whose mission is to Rewrite the End of ALS by raising money for research and awareness building. He uses his background in film to tell the stories of other people with the disease. “ALS does not define who you are,” his website says. “It’s just a part of your story.”

Having known Kevin for a couple of years, one thing I’ve noticed is that he always looks dapper. Nice jackets and ties, big smile. That kind of effort is not easy, but it’s really important. It’s just one more way that we continue to care about ourselves, when we can’t always care for ourselves. Even in a t-shirt and jeans, Kevin Swan is nicely put together. So you can tell that being here still matters to him.

Although my once-muscled limbs are melting like ice cream, I can appreciate that desire to look your best. I mean, I wear Uggs every day, like someone’s toddler going to music class, but I brush my hair. I put on one of my maxi dresses, and I try to feel grateful for another day. I try to hold on to that feeling that Kevin and I still share, that we’re lucky to be here. That we still have work to do.

Read Kevin Swan’s story here.

Watch Kevin Swan’s story here.

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Speed4Deb

Today I am featuring the remarkable story of Deb McQueen-Quinn, and I’ll keep this post short, to allow you to focus on Deb’s tale of familial ALS.

However, there are a few things you should know about this lovely woman. She is a seamstress, incredibly talented, and very thoughtful. Scarlett recently opened a package in the mail, and inside were 30 handmade headbands, sent by Deb. Rainbow, heart-print, Minnie Mouse, 4-leaf clovers, exploding fireworks, flowers. Scarlett sat in her pile of headbands and smiled. And that was exactly Deb’s intention.

I got to meet Deb at ALS TDI’s fundraising gala last November. She rolled her wheelchair up to mine, and introduced herself. She explained that she has help with her sewing now, as it’s hard on her hands. She looked down at her stockinged feet and told me, “Shoes weren’t happening tonight.” We laughed. That night, Deb handed out tote bags she had made, many of them personalized for her friends with ALS.

At the 2014 ALS TDI leadership summit, Deb was the recipient of the Fran Delaney Award, which is presented annually to a person who has shown true leadership within their community. That is definitely Deb.

And a few weeks ago, I got a card in the mail. It was from Deb, a hug in an envelope, because she had been thinking about me.

This fabulous woman deserves an end to ALS more than anyone I know. She and her family have been through enough. And still she smiles, and laughs, and does things for others. A true leader, indeed.

Read Deb McQueen-Quinn’s story here.

Deb Diagnosed at 45

Deb Diagnosed at 45

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