I’ve seen a lot of people talking about the Ice Bucket Challenge for ALS lately. I’ve read theories about how people aren’t donating more money, they are just donating to ALS and in the process hurting other charities. I’ve read people talk about how it is a waste of water. I’ve read about how many of my friends in Rettland wish so badly that it was us making headlines. Maybe I am just a sucker, but when I see the posts of people dumping water on their heads, it excites me.
Perhaps I am just more hopeful than normal because we are in Boston and we are spending time with researchers who are conducting a trial for Rett Syndrome. I must say that is a very inspiring thing. After driving by Fenway on the way to our hotel tonight I saw this video. It is the story behind the Ice Bucket Challenge and I think it is rad.
When I see other organizations go from $2 million to $23 million in the same time period it excites me. I hope that soon we look back at the movement that changed the game for ALS. It reminds me of the “unless” that is out there in the world. The people who put this together have hustled and fought and in this moment they are winning. When I go to the Red Sox game tomorrow night I will think how each of the players, at one point in their life had a dream followed up by a lot of hustle and courage to chase that dream. When we flew here I thought about how the Wright brothers would never have dreamt that flight would become what it is today.
I just love looking at the world around me, thinking of how far we’ve come. That is what makes it possible for me to remember that we are headed to a world where Rett Syndrome is known to all as a treatable disorder. That reminds me, in October the Rettland Foundation is holding it’s first fundraiser. Would you join me in “NOT” speaking up for Rett Syndrome. I figure if people will dump ice on their heads, maybe they could take an hour, find other ways to communicate and realize why we fight like we do against Rett Syndrome. For more information you can go to http://rettland.org/notspeaking/ I would be honored if you would join in our fight, to spread awareness and help us to raise money to support the families in the current clinical trials.