Seven Hundred Eighty-two. Five hundred twelve. A sh*t TON of donations. Those were the final totals in terms of new Fight Like a Champion (FLAC) donors, Ice Bucket Challenge (IBC) Videos referencing my name/FLAC and the amount of money donated to the medical trust over the greatest month in ALS awareness history. I actually physically pinched myself one time to make sure this all was real. My “ASL” err “ALS” disease now had a brand new home and conscience in the hearts of a curious nation. Why the hell is Jimmy Fallon’s crew dumping ice water on their heads? Justin Freaking Timberlake is doing it?!?!? The President of the most powerful nation in the world and his two daughter’s did it too!
I went about my routine as if nothing had changed in my little bubble world. But then it did change. I no longer had to add the “/Lou Gehrig’s Disease” in the back of “ALS/Lou Gehrig’s Disease” and explain what the disease was, like I had to thousands of times before that. “ALS.” People knew. People actually knew it was a horrible disease. It now had a rather endearing ring to my ears instead of that old cardboard box opening sound (THAT is my nails on a chalkboard. It also doubles as my “I can’t pack my place to move because of that noise so someone please do it for me. Oh by the way I also have ALS so someone really has to pack for me.” – I love pulling out the ALS card).
Short of JT himself being diagnosed with ALS (PLEASE take that as the humorous joke it is meant to be!), I don’t think anything could have spread more awareness than those glorious 6 weeks (we’ll call them). Every time a new IBC tagged my name in Facebook or a new donation was made, I got the same ‘ding’ on my computer. I tried telling Lindsay what was occurring, that seemingly every 27.85 seconds I would hear a new ‘ding,’ but a text to her did not do it justice. During the craziest week of the IBC, Linds and I sat at home doing our normal gig at night when the computer literally just kept dinging every 5 seconds it felt like. Every time, we would have that same half “you have got to be kidding me” grin on our faces as we turned and made slight eye contact. The scene from Zoolander crossed my mind with each ding representing a new ticking time bomb…. “IT’S IN THE COMPUTER!!!!”
I’m sure many of you have seen the statistics… over $120M dollars raised for ALS research in 6 weeks…. Or 20%+ MORE that was raised in the entire 2013 calendar year. To tie a bow on this, I just want to thank each of you for your amazing videos. Special thanks to my Aunt Anne, Uncle Dan, Coach Stilling, Schaumburg’s Football Team, Richard Price, Marty Kaplan and all of Mesirow Financial, Sarah Coleman and all of MDA for their hilarious group videos that made my month. From little kids doing it to Lindsay’s high profile associate, Dr. Nicholson, getting more water dumped on him at a higher velocity than anything I think I’ve ever seen before haha. I will always have his facial image at the point of contact glued in my mind forever anytime I need a little pick me up smile. And that’s what it was about. Not the money. It was the everyone from the smallest of children to most famous doctors, actors, athletes and musicians all coming together in a fun natured manner to have more impact on people like me than they will ever conceptualize.
“He went to Jared”
No, I didn’t actually go to Jared, but the greatest thing in my entire life happened to me since I last checked in. As some of you know, I got engaged to the most beautiful, smart, caring, nice, witty, compassionate, easy-going, sweet and most selfless woman I could ever ask for. I really still can’t believe I found Lindsay and to steal a quote from….yeah…. Lou himself, I feel like “the luckiest man (man man) on the face of this earth (earth earth). We could not be more happy and thankful for all the warm wishes. I once told one of my best buds Steve Williams in June years back, after knowing Lindsay for a mere 4 months… I said “Steve, there’s something about her, I dunno what it is, but I really think I’m going to marry this girl someday.” Those who know me know that was probably the least likely phrase I would utter as I entered my late 20’s after a decade of debauchery and tomfoolery. What can I say? It’s been about her since the day I met her and will be that way until the day I die. I am beyond excited to call her my wife. Special thanks to Elisha and Kevin (better known now as “Cam’s parents” haha) and Kevin’s cousin Steve (You’re the man Steve!) for all their hard work helping me find the perfect ring for Lindsay. Also, great thanks to Maureen Flood and my family for all their hard work helping me make it the perfect weekend while I was stressed to the max about it. And I can ensure you, there will be NO cheesy professional or amateur engagement photos posted all over Facebook. Seriously people, get over yourselves! :) Wedding? Fine. Kids? I agree. 562 professional engagement photos flooding my Facebook? Come on now! Relax, I’m just joking around as I know I just offended at least half of you lol.
Yeah. ALS sucks. Bad. The end.
I am actually happy to announce for the first time publicly that I was recently accepted into one of the most highly touted and previously-mentioned-in-my-blogs Brainstorm “NurOwn” Stem Cell trial. I don’t want to get hopes up because this is NOT a cure (which is one reason I haven’t told really anyone including extended family). But, this is one of (if not the most) hyped ALS trial ever to hit United States soil. After showing some efficacy and great promise in Israel, Brainstorm finally got the FDA OK for a 48 patient trial in the US. Thousands and thousands of applicants. 48 patients selected. I literally won the lottery…. Albeit not as big odds as the ALS lottery I ‘won’ in June 2013 lol but a pretty damn remote lottery if I do say so myself. Just last Monday I had a bone marrow aspiration surgery, where they extracted my own hip bone marrow. It was definitely painful right after…. But now it’s only literally a “pain in the ass” and I’m used to those by now. Unfortunately, mixing narcotics with my cocktail of ALS drugs was not something Dr. felt comfortable with, so no fun pain-killers, just stupid old Ibuprofen! Then, they will cultivate my bone marrow into millions of healthy stem cells and then apply their IP technology to those stem cells. Then, in 13 days, on November 13th, they will re-inject those stem cells into my spinal cord and with 24 shots of them into my arm muscle while we all pray that this groundbreaking trial will slow, stop or reverse some symptoms/progression. There is also a 1/4 chance I receive placebo instead of stem cells, so another reason I am not getting my hopes TOO high. Just roll with the punches.
There are so many people to thank and fun things going on in my life to talk about…. But I’ll check back in soon!
Happy HAlloween everyone!