Category Archives: Research

Life Moves Pretty Fast

Last month there was a big ceremony at my former high school in Oak Park, Illinois. Four alumni were awarded the annual Tradition of Excellence, a recognition of work that is representative of the Oak Park River Forest High School ideals and mission. I was fortunate to be one of the recipients, based on a nomination from one of my classmates. As my ALS progresses, travel has become very difficult, and I wasn’t able to attend and speak directly to the 3000 students who piled in to the auditorium for two different presentations. Instead, I made a video, and my parents and two of my best friends went on my behalf.

That morning, I was agitated and I couldn’t figure out why. I suppose I was wondering if my words would land in a meaningful way on this audience. A big part of me was disappointed that I couldn’t be there, and I was anxiously awaiting feedback. I shouldn’t have worried. The events went beautifully, and the Student Council representative who introduced me and my video did an excellent job. Afterward, I received photos of my friends standing next to the wall where my photo would eventually be hung, alongside people who have made much grander contributions to society. It was extremely humbling.

But the best part came a few weeks later, when an OPRF senior sent me a message. Her business class finishes every semester with a group project that benefits a charitable organization of their choosing. Hannah had written to tell me that her group had chosen #whatwouldyougive and the ALS Therapy Development Institute. They made T-shirts using our logo and you can see and purchase them here.
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|Categories: Age, Life, Progression, Relationships, Research | Tags: , , , | Permalink

When the Giving Gets Good

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>

|Categories: Cure, Doctors, Drugs, Faces, Life, Relationships, Research | Tags: , , , | Permalink

Here We Go

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>

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