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

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