Tag Archives: whatwouldyougive

August Approaches

When I launched the #whatwouldyougive campaign in June, I thought I would be lucky to get 30 team members. As of today we have 71, and some of those are fundraising groups that include more than one person. We have so much support. The challenges are starting August 1. People are giving up their voices, their hands, their arms. At least four people are going to use wheelchairs for a day—the extreme challenge.

The team is getting geared up. Members are posting about their challenges, in a continued effort to raise awareness. My friend Rob Becker even started a website to share his experience, and his observations about preparing to take public transportation with a wheelchair are worth reading.

I’m so excited and motivated by our amazing team. We have raised over $71,000, with an incredible 731 donors and counting. I need to stop and appreciate those numbers for a moment. More than SEVEN HUNDRED people have given to the cause. There are people on this team who I’ve never even met. And we still have a month of fundraising to go. Read More>

|Categories: Cure | Tags: , , , | Permalink

Why would you give?

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. Read More>

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

#Whatwouldyougive FAQs

Yesterday, I launched a new fundraising campaign called #whatwouldyougive. I did this because I wanted to create a fundraiser that helped people understand just a bit of what it feels like to be stripped of the basic abilities that ALS takes away. The things that most of us take for granted. The things that I absolutely took for granted until I received an ALS diagnosis when I was 33 years old. I’m 36 now, and even after all I’ve given up, I’m not giving up.

While most fundraisers center around a physical activity that requires ability, this one is about the things ALS takes away. During the week of August 1-8, team members spend a day (or an hour) giving up an ability in an effort to *begin* to understand what life is like for a person with ALS.

Examples: Have someone feed you meals or brush your teeth; type on your phone to communicate. This experience is a fraction of what people with ALS deal with, all day, every day. What would you give in order to live normally again? What would you give to end this disease? Each team member reaches out to their network to raise money around their efforts.

Our team is raising money for ALS TDI, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS. With more attention and funding, we can find treatments and an eventual cure for ALS.

Here are a few FAQs to help people better understand the concept and how to get involved. All support is so appreciated! Read More>

|Categories: Life, Research, Vanity | Tags: , , | Permalink