Category Archives: Research

#whatwouldyougive 2015

My daughter starts Kindergarten on Wednesday. She’ll be at this school for the next nine years of her life. I’ll drop her off on her first day, take her to her classroom, kiss her goodbye. I’ll watch her as she takes this big, brave step, meets new friends, and finds a space for herself. And I’ll think about the day, nine years from now, when she finishes her last year at the school. I’ll think about how I should be there to pick her up that day. How much I want to be there.

This weekend we went to the wine country wedding of our dear friends. I watched my daughter dance, watched her chat comfortably with other guests, watched her insert herself into formal wedding photos with the bride and groom. I watched as she ate a cupcake, and a cookie, and then wandered off to find the donuts she’d been hearing about. I thought about all the big days in her future, how maybe one of them will be a wedding. How much I’d love to be there.

I love watching my daughter. I love to see her learn and grow and do ridiculous things followed by remarkable things. Being there for her, in moments big and small, is all I want in the world.

And it’s why I started the #whatwouldyougive campaign. I can’t adequately express my gratitude to all of the team members who challenged themselves by giving up an ability to raise money for and awareness of this cause. You have no idea what your support has meant to me. All I can say is thank you. And that you are some *seriously* impressive fundraisers.

It’s the last day to donate, and so many of you already have. Thank you. Your generosity wildly exceeded my expectations. Thank you for caring about our lives, and the lives of all the people dealing with ALS. Someday this disease will no longer be allowed to destroy families. Someday, maybe, I’ll see my little girl walk into high school. Someday, maybe, I’ll dance with her again. I hope so.

Donate here.

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

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

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