When I first started talking about the idea for the #whatwouldyougive campaign, it was met with a lot of enthusiasm. The only hesitation that people seemed to have was that it was a little depressing. Would anyone want to give up an ability for a day, or even for an hour? Why would someone want to spend (waste?) their time in that way?
These were good questions. Our previous fundraisers have been bike rides and walks, activities that people could train for, things that they could feel good about. And even though I had fun at the first bike ride we did, it didn’t escape my attention that we were all gathering to participate in an activity that wasn’t possible for me. One group, including my husband and many other friends, road 100 miles. It took them 8 hours. So they spent the day together, biking through the gorgeous Napa Valley, while I stayed back at our tent, meeting people and hanging out with other amazing friends, some who had traveled across the country to join our effort. I have no complaints. But I wanted to create a fundraiser that raised more awareness about the realities of ALS.
When I talked to friends about it, I acknowledged that it’s easier (or at least more fun) to train for a bike ride or run. I understood that they might think they couldn’t do this for a few hours, or for an entire day. But that is exactly the point. ALS doesn’t care what’s convenient. It doesn’t care if the timing works for you. Right now I’m dictating this blog into a headset, and it’s hard (my first effort at that sentence resulted in “Right now I’m defeating the slot into a headset.”) I’m supposed to read as though I’m an anchorwoman, reporting the evening news.
Next up, a story you won’t believe about a mother cat, a homeless mouse, and four dryer sheets.
But I’ve never been a broadcast journalist, and this software is showing me that I need serious practice with annunciation.
I’ll keep working on the dictation. In the meantime, I’m very happy to report that #whatwouldyougive has had a hugely successful start. We have 44 team members, and more people promising to join each day. These are people who decided that it is worth it to give up an ability, people who are supporting me or other loved ones with ALS, or fundraising in memory of someone they’ve lost to the disease. And these folks are not joking around. In less than two weeks we have raised more than $21,000.
Joining the team isn’t for everyone. It is hard to give up an ability, even for a short period of time. But there are other ways to get involved. Every donation that we receive is so deeply appreciated. This is money that will go directly to ALS research. ALS TDI received a rating of 96.09 out of 100 from Charity Navigator. Guidestar (first dictation attempt: fungi start) gives them a Gold rating.
What will ALS TDI do with the money? They’ll use it to advance their Precision Medicine Program, which is growing ALS cells from individuals with the disease and throwing drugs at them to see if anything works. They’ll use it to move a new drug through the research pipeline, a drug that CEO Steve Perrin says is the most promising one they have ever tested. This all takes time (first attempt: The Celtics time), and that is certainly something that people with ALS do not have in abundance. But ALS TDI understands urgency, and they are moving quickly to develop drugs, to find treatments, to save lives.
Everyone who takes part in the #whatwouldyougive campaign is helping to further this goal. I cannot thank you enough for that.
Please consider a donation to the cause.
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Hi Sarah,
We are in. Even though our family is faced with ALS every day, I know we still do not understand the frustration that Jason, our son must experience each day. It’s a good lesson for all of us to “walk in the shoes of our loved ones with ALS” and even though we might find this experience challenging and even depressing, it will inspire all of us to continue our determination to find a cure. Love what you are doing.
Barb Smith