Who wants to talk about #whatwouldyougive?
Trick question! This is my blog, and we’re going to talk about whatever I want to talk about. And this particular post is long overdue. Part of the reason I haven’t been talking about the campaign is because there is almost too much to say. August was a huge success for us, and our incredible team members brought in 170K, a number I can barely believe. As many of you know, our goal is to raise 250K for research at the ALS Therapy Development Institute in Cambridge, Massachusetts. These brilliant folks have a promising drug that can go to trial in 2018—but not without help.
What you may not know is that our campaign isn’t over yet. We launched the second wave of #whatwouldyougive this month, and it’s a big one. We are partnering with hundreds of social influencers (Bloggers, Tweeters, Instagrammers, and more) to raise further awareness about ALS and our efforts to find and fund treatments and a cure.
How does this work? Read More>
Tomorrow is the first day of August, and the first day of the 2017 #whatwouldyougive campaign. I can’t believe that this week has arrived. First of all, when I initially conceived of the idea for this campaign, I thought it would only be a one-time deal. It’s beyond inspiring to see how many people joined, whether to take the challenge of giving up an ability, to donate generously, or to hold our signs and stand in solidarity with the many of us who can no longer stand on our own.
By far, my favorite part of the campaign week is the reactions from those who are giving something up in an effort to understand just a little bit of what it might feel like to live with ALS. Right away in year one, I realized that people were getting it. They were understanding the frustration, the loneliness, the helplessness. They were grasping the concept that life with a sudden disability is not only shocking, but incredibly inconvenient. They were grateful, some tearfully so, when they could use their entire, strong bodies once again. And I loved them for it. Read More>
Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:
1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.
2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.
3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>