Stem Cell Treatment for LGMD2i

*from November, 2015

As most people I'm close-ish with know, I’ve been struggling with a condition for the past 5 years (and to some degree, my whole life) that has caused my leg and hip muscles to become very weak. I’ve been sorta diagnosed, un-diagnosed, re-diagnosed, and (finally/recently) officially diagnosed as suffering from a condition called Limb-Girdle Muscular Dystrophy type 2i . I’ve written in the early stages before I knew too much  about it , and earlier this year when I was possibly improving . It wasn’t until this past spring when the fine peeps at The Jain Foundation helped me attain a grant to have an official genetic test done that it was confirmed: I was not going to get better -I had a debilitating disease with no cure. When the foundation contacted me with the results of the test, all I could say was “OK”.

At least I didn’t respond with “K” the way people passive-aggressively respond to texts.  I regrouped with my doc and, In keeping with the positive feedback he always seemed to have, he explained stem cell therapy to repair the damage is not too far off and that I’d likely benefit from it greatly. I talked to a lot of people, did plenty of Googling, and found some promising (and not so promising) information and options all over the world . Since then, I’ve had months of conversations with people who’ve had stem cell treatment, visited a great doctor and team at the University of Iowa (go Hawkeyes, obviously) that is making huge strides for everyone suffering from this rare disease, met with some other inspiring people in North America dealing with this condition, had a couple minor injuries and setbacks over the few months (nothing too serious but I did fall on my face while carrying an embarrassingly large pizza that I later ate an embarrassing amount of), and, aside from this health issue, I’ve been having one of the happiest and most productive years of my life. Honestly, everything else is pretty "lit" as the kids say. I have an awesome wife, friends, family, pets, a creative/fulfilling career, and the Cleveland Cavaliers are an elite team again. That being said, my body is very much struggling to keep with me and all this awesomeness.  I want to do anything that could possibly help me improve -now. I'm living a good life and "it's time to get back to the goodlife". 

All the encouraging information doesn’t change the fact that the procedure itself is, as the cartoon character Doug’s WEALTHY neighbor Mr. Dink would say, “very expensive”. So I’m putting out this polite request for anyone who would like to contribute a little bit to please do so. This is honestly the hardest thing I’ve ever had to do on the internet (so much harder than the “History of Jazz” online class i took in college).  I even feel the website name “Go Fund Me” is a bit aggressive. I wish there was a site called “Sure Reckon I’d Welcome a Little Help if You Could Spare It *tips cowboy hat politely*(dot com). I’d definitely feel more comfortable using that site. I wouldn’t ask if I didn’t 100% believe now is the time to do this. And I'm saving up as well...c'mon, I'm not putting this all on you guys!

So what am I hoping to accomplish? I’m raising the money to cover the procedure itself and travel involved. After researching this for months, I believe I found the best options for treatment with the most proven track record. These methods use your own cells from bone marrow or fat and the improvements others have had lead me to believe my body will be more stable and I’ll struggle less. I’ll be able to get from point A to point B safer, and possibly get back some of the ability I’ve lost. Like I said, I feel very fortunate that through a great support system and hard work I have a pretty good life. I'd imagine if I'm able improve this condition, even remotely, I could be the Tom Brady of doing really normal things. My dream is to eventually go running, play some sports, and maybe do a little roughhousing (I feel like I’ve missed out on some serious roughhousing with my buds over the past decade) but I’ll take any improvements I can until more treatment and cure options eventually become available. I’m not expecting to dance like Mario Lopez for a while, but I’d love to confidently sit backwards in a chair like AC Slater. Don’t get me wrong, dancing would be pretty sweet.  If I get this procedure and it helps enough, I’ll do some of Drake’s popular dance moves from the “Hotline Bling” video down Pico blvd in DTLA. Heck, I’ll fly home to Ohio and do it in a Sheetz . Hold me to that. The funniest thing about that is how dated that reference will be by then. 

I also want to do this to raise awareness for this extremely obscure disease and the inspiring people I've met that are also dealing with it. Had you heard of LGMD2i before reading this? Probably not. It's like the muscle disorder equivalent of an obscure Brooklyn band that hasn't ended up on Noisey or in Fader yet, and I want to be one of the kids who posts the poorly shot/bad sounding Instagram vid that breaks them.

I want to raise awareness while improving my quality of life. And even though this is serious stuff, I wouldn't do it if I didn't think we could have some fun with it, so I'll keep everyone interested updated in the most entertaining ways possible. 

Thank you for being a friend. 

PS  Mr. Dink, if you're out there and you didn't lose it all during the recession, I'd love it if you could help out a bit.

Any questions, ideas, or concerns? Send me a message.