Category Archives: Cure

ALS By Any Other Name

It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>

Ice Buckets Everywhere

My family and I are all on one hotel bed watching a summer storm in Lake Tahoe. Rain is beating across the windows, and, from somewhere distant in the mountains, we can hear thunder. Scarlett is ecstatic. She’s been wanting a storm, and actually cried earlier when we told her it might stay sunny all day, nice enough to swim at the outdoor pool. I think the real reason she wanted the rain was because I mentioned it would be a great time to come inside and drink hot chocolate.

It’s been a lovely few days of vacation so far. We’ve wandered around a couple of resort towns,  eaten good food. Scarlett has gone biking and kid-style bungy jumping. And then there are the challenges.

I’m sure there’s something wrong with spending your vacation watching videos of people dumping ice water on their heads, but how can I stop? So many of them are doing it for me. For these two people next to me. Even Scarlett arranged to have someone nominate her, so that she could stand in a hotel bathtub with an actual ice bucket and do the same thing she’s seen other people do for the past week.

The videos are amazing. My family, my friends, people I haven’t seen since high school, are saying the kindest things and then dousing themselves. It’s beautiful. It’s hilarious. And it’s working. There has been major news coverage of the #icebucketchallenge, and hundreds of thousands of dollars raised. Entire sports teams are participating. Actors are posting videos from their showers. Musicians are being nominated and they’re welcoming the challenge. People who didn’t know what ALS was last week know what it is now. I just saw on Twitter that Justin Timberlake accepted the challenge and nominated Jimmy Fallon!

The Director of ALS Therapy Development Institute told the Boston Herald, “We are seeing 10 times the number of online donations every day.” At speed4sarah.com, we’re also seeing an influx of donations, so much, in fact, that we’re now in the top fundraising spot for our Napa bike ride in September.

Apparently, there are some people who take issue with the #icebucketchallenge. For those of you who worry about the waste of water, I offer you this reassurance: Ever since ALS made showering more difficult for me, I have been taking shorter, less frequent showers. So fear not! I’m pretty sure that I alone have offset half of the water loss from these challenges based on the showers I’ve skipped this year.

I’m told I still smell fine by people who would DEFINITELY lie about that sort of thing.

If you’re still concerned about resources, which I can understand, skip a shower or cut one a few minutes short. If we all do this, we’ll easily save more water than the challenges are using, and we’ll still raise awareness of ALS. And if you’re annoyed that your Facebook feed is overrun by the #icebucketchallenge, I say GREAT! You have really awesome friends. They are helping to get the word out about what ALS is by making themselves uncomfortable for a few minutes.

And that is, of course, the whole point. To raise awareness of this specific disease, so that people can begin to understand how it affects the aspects of daily life that most of us have always taken for granted. Like showering. Like standing. Like speaking.

Thank you to Pete Frates and Pat Quinn for coming up with the kind of idea that could go viral and for executing it beautifully. Thank you to everyone who has been filling up my Facebook feed with videos that warm my heart even as they chill your blood. I feel truly supported. This is raising awareness. And this is what will make ALS history.

Now, if you’ll excuse me, I need to go find some hot chocolate. Don’t worry, I won’t be pouring it on anyone.

An Underfunded Disease

“ALS is not an incurable disease.  It is an underfunded disease.”  – Stan Appel, M.D.

Last year, my husband Rob gathered a huge team of people to participate in the Napa Valley Ride to Defeat ALS. The event was held in September in Yountville, California on a gorgeous day. And I was nervous. It’s sometimes hard for me to prepare myself to be around other people with ALS, people who are further progressed than I am. I was afraid that what was meant to be a day of fun and accomplishment was instead going to be wildly depressing.

I am happy to report that I was wrong. Read More>