Tag Archives: icebucketchallenge

Ice Bucket Challenge

Rob and Scarlett are dueling over music right now. He’s controlling the Sonos system in the house, which means he basically wins, but she’s giving him a good run on the back deck with Let It Go, tinny on my cell phone, but somehow still SO LOUD. Rob turns up The Black Crowes. Scarlett clears her throat and gives it her Elsa all.

The battle flips to Margot and the Nuclear So-and-So’s versus something horrendous from Kidz Bop. Obviously this seemed like the perfect time to sit down and try to write.

Rob is still on vacation this week, but we’re home, just dealing with end-of-summer things: purchasing school uniforms, contemplating how to handle an $875 parking ticket, continuing our efforts to train Otto (and wondering if his training could include a court appearance to argue that ticket down to a more reasonable amount. This is a story for another blog, especially if Otto does end up being our lawyer.)

Can we really now be listening to both Bonnie Raitt and The Wiggles? Why is this happening?

Rob is opening a bottle of wine. Now that’s a sound I can handle.

Today was Ice Bucket day. I knew we would be doing the challenge again, but Scarlett was vehement that she and Otto be our family representatives in the chilly endeavor. So there they were in all their glory, (slightly different from their current status running in circles together listening to Shut Up and Dance With Me while Rob tries in vain to calm things down with Tom Petty’s Wildflowers. This is not an “everyone wins” situation.)

A reprieve. Scarlett and Otto go deeper into the yard, their noise receding until all I hear is Rob’s REM. The wine is pink and cold, the grill is filling the yard with sweet and smoky smells, and a breeze is blowing towards my spot at the dining room table. I think I’ll leave it at that, enjoy having only one song in my head, and just share our #icebucketchallenge video.

Every August Until A Cure.

Wait. Taylor Swift vs Led Zeppelin? Someone stab me with an ice cube.

|Categories: Cure, Drugs, Life, Parenting, Research | Tags: , | Permalink

August Approaches

When I launched the #whatwouldyougive campaign in June, I thought I would be lucky to get 30 team members. As of today we have 71, and some of those are fundraising groups that include more than one person. We have so much support. The challenges are starting August 1. People are giving up their voices, their hands, their arms. At least four people are going to use wheelchairs for a day—the extreme challenge.

The team is getting geared up. Members are posting about their challenges, in a continued effort to raise awareness. My friend Rob Becker even started a website to share his experience, and his observations about preparing to take public transportation with a wheelchair are worth reading.

I’m so excited and motivated by our amazing team. We have raised over $71,000, with an incredible 731 donors and counting. I need to stop and appreciate those numbers for a moment. More than SEVEN HUNDRED people have given to the cause. There are people on this team who I’ve never even met. And we still have a month of fundraising to go. Read More>

|Categories: Cure | Tags: , , , | Permalink

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