Ice Bucket Challenge and the like...

I've seen about 98% positive posts about the Ice Bucket Challenge, which is wonderful. But some people have stated that it is silly, or that it isn't doing anything, or that it isn't actually creating any donations, etc.

I want to address a few things based on my experience and my opinion, so take it or leave it.

1) The Ice Bucket Challenge is silly.

Response: Yes, yes it is. Thank goodness for our ability to be silly every once in a while. If you think this is too "silly" for you,  you may take your life too seriously 100% of the time. Silly is good! Try it.

2) All of this is some social media viral craze that isn't doing anything except giving people a brain freeze.

Response: Interesting thought - especially coming from someone who, to my knowledge, has never even mentioned the letters ALS together, nor knew what they stood for, nor understood the disease in any way. So the mere fact that these people, and MANY, MANY more are actually AWARE of this disease, they are TALKING about this disease, they are SHARING their awareness, is amazing and is creating a dialogue about ALS and, I hope, SMA.

Do you know why ALS and SMA are underfunded? Because NO ONE was talking about it! I had not thought much about ALS, nor did I know what it really was until I met Steve Gleason and family. If you want to know what ALS really is, go to www.teamgleason.org and read, watch, learn, and fall in love with this incredible group of people who are not only driving the conversation, but making it possible to really LIVE with ALS.

If you want to know more about SMA, visit http://gomillergo.wordpress.com. This incredible little boy and so many like him and his family need there to be more awareness, conversation, and a cure.

So, yes, it is actually doing something - a lot of somethings! Keep the conversation going.

3)Everyone is dumping ice over their heads, but are they giving?

Yes, they are giving. They are talking, dumping, giving, sharing. If you don't believe me, read this: http://www.forbes.com/sites/tomwatson/2014/08/15/hey-cynics-hold-that-cold-water-why-the-ice-bucket-challenge-worked/

4) So are there any downsides to this ice bucket challenge?

Yes and no. No, there are NO downsides to this challenge as it exists to do exactly what it is doing.

The only downside coming to this is that we can't let the conversation stop here. Don't let this fun, energizing, mobilizing conversation stop with the last bucket, which, my guess is, is coming soon. This challenge will come to a close, but there is still so much work to be done, and it needs to be done now.

I hope the organizations fighting ALS will make their move NOW! Don't wait. Engage the donors who have given to you, engage the people who are talking about you, tell them what you have done, what you are doing, how they can help. Send them updates, make them WANT to continue to talk about you, act on your behalf, and continue the momentum.

We have a huge opportunity to strike out this disease, to strike out SMA, to strike out the inability to have a voice or a life when living with these diseases. If you don't believe me, believe him: