Category Archives: Diagnosis

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

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

ALS Awareness Month

May is ALS Awareness Month. Last year at this time, I changed the Speed4Sarah Facebook profile picture to this:

I like to stay optimistic about my future, to recognize that no one knows what’s going to happen and that we could, in fact, find a solution to slow down this demon—in my lifetime. But I also appreciate statements like the one above, because I think they help people begin to understand the absolute INSANITY of ALS. It sounds like science fiction, but it happens to people every day. Today, someone will experience the first signs of ALS, and they will have no idea what the hell is going on. Someone (many someones) will be officially diagnosed. People will die of ALS today.

It’s a conundrum for me, as I try to share my love of life on this blog, while not sugarcoating the reality of how everything has changed, and will continue to change.

I am someone who could walk—and who did, even at times when driving made a lot more sense. I am someone who could run—and ran miles. I am someone who cooked—and loved trying new recipes. I am someone who traveled—all over the world.

Those things are gone, and it’s completely true that I’ve found new ways to release stress and find happiness. But I miss my abilities, which now feel more like they were superpowers. Read More>

|Categories: Cure, Diagnosis, Drugs, Faces, Life, Progression, Research, Therapy | Tags: , , , , | Permalink