A quick update on Cohen: he has been home from the hospital for the longest stretch of his young life, and we intend to keep it that way. He is still on oxygen and a feeding tube, but is quickly chunking up, so hopefully soon those things will go by the way side. For everything that this little boy has been through, it is amazing to me that he is probably the happiest human being that I've ever seen in my life. If you make eye contact with him, it takes less than 3 seconds for him to glow with the widest smile ever. These wide smiles are seen mostly when his big sister, Isla, dances and sings for him.
As I mentioned earlier, the reason for starting all of these random acts was the birth of my daughter. I always had the idea and intention to continue them coast to coast, but I was rejuvenated after welcoming Cohen into the world. After learning of his genetic disorder I wanted to do anything and everything in my power to make as many people learn about 22Q Deletion Syndrome as possible. I wanted to come up with creative, abnormal, and crazy ways to get the word out there to try to reach people. I intend to come up with a ton of new ways to get 22Q in the minds (and web browsers) of as many people as possible, so if anyone has any ideas, feel free to send them to 366RandomActs@gmail.com.
A few months back, I was having a brainstorming session for State of Kind trying to come up with what I was going to do for certain states while enjoying a beer from a local brewery here in Chicago called Pipeworks. Pipeworks is well known for making incredibly delicious small batch beers, and one thing all of their beers have in common besides outstanding taste, is a little blurb on the side of them that tells a story. I thought to myself "Self, wouldn't it be awesome to have a fundraiser beer with a picture of Cohen on the bottle and a little blurb to raise awareness for 22Q?," so I sprung into action to see what I could figure out. A couple of friends of ours knew one of the owners from Pipeworks, so I reached out to her to see if the brewery might be down for something. She said they are definitely the types of people who would be willing to help out with the cause, and so she introduced me to Beejay Olson. I told him my family's story and what I was trying to do, and I heard back quickly from them that they were more than excited to help out. I went to meet Beejay and his co-worker, Mike, at Pipeworks one day, and I could tell that the excitement was legitimate. They've made it one of the goals of their business to give back to the community around them, so we are kindred spirits in that regard. We came up with the idea to do a fundraising brew called Cohen's State of Kind, a Belgian style Witbier flavored with blueberry, hibiscus, and chamomile (due to the fact that, understandably, it isn't kosher to use the image of a baby to sling beer, we went with the awesome logo below). Some of the proceeds from the sales of the beer would be donated to The Dempster Family Foundation (the 22Q foundation I have partnered with for SoK), and they were also donating a keg of Cohen's State of Kind to a fundraiser we will be putting on with DFF on July 12th. Everyone was even cool enough to allow me to come in on Memorial Day to help with the actual brewing of the beer. This past weekend, my wife sent me off to the store and as I was walking by Pipeworks (they are right around the corner from us) I saw pallets of the beer stacked up ready for distribution. The guys were nice enough to send me home with a case, and let me tell you, the beer does not disappoint. It is the perfect summertime brew.
The beer will be available this week for purchase around the Chicagoland area. Here is a partial list of the retailers, but be sure to call ahead because it looks like it is going to sell out fast. The aforementioned fundraiser with Pipeworks and The Dempster Family Foundation will be on July 12th from 3-5 at Howells & Hood here in Chicago. Tickets are available at this link. You will have the chance to try Cohen's State of Kind as well as hang out with World Series Champion, Ryan Dempster and 2011 Chicago Sport and Social Club Kickball Champion, Ryan Garcia (me). Also, you would be helping to raise funds and awareness for 22Q which is close to my heart. So as the blurb on the bottle tells you come "sit back, relax and enter a new State of Kind!"
