Chicago Fundraiser: Cystic Dreams Fund Inc.

The Cystic Dreams Fund Inc is a 501c(3) organization whose mission is to provide financial assistance to Cystic Fibrosis patients struggling with the financial burden that comes with trying to fight against the currently incurable disease.


For folks that don’t know about the disease, from the National Institute of Health website:

“Cystic fibrosis (CF) is an inherited disease of the mucus and sweat glands. It affects mostly your lungs, pancreas, liver, intestines, sinuses and sex organs. CF causes your mucus to be thick and sticky. The mucus clogs the lungs, causing breathing problems and making it easy for bacteria to grow. This can lead to problems such as repeated lung infections and lung damage. “

My longtime friend, Paul Mooney , suffered from CF his entire life. He constantly battled with doctors over his treatment while battling the disease. Another battle was the chronic one he fought with his finances. Insurance coverage for older CFers can be near impossible to come by and without the financial support of friends and family; Paul would have lost his battle long before he did. In typical Paul fashion, he thought of those that didn’t have a reservoir – even a limited one – of family and friends to enable them to receive the treatment they need. The Fund, established by his family in his memory after his death, intends to help fill this gap for people.

The Fund’s first major fundraiser is going to be held in Chicago, Paul’s adopted home town, on March 27 from 7:30PM to 11:30PM at the Lincoln Tap Room at 3010 N. Lincoln Avenue in Chicago, IL. In addition to being a gifted writer, Paul wrote and performed songs framed by his experiences (you can purchase his posthumously released album  here) and fabulous musicians, Dorian Taj and For Pilots will be performing the entire album during the benefit. There will be a silent auction as well so if anyone in Chicagoland wants to donate items for the auction, you can contact me or the Fund directly through their website. We’ll take just about anything – and we’d especially take a visit by you to the Lincoln Tap Room. Come enjoy some great music and musicians while supporting a great cause.  Of course you can always contribute directly to the Fund through the website as well.  Thank you for the support and I’ll see you there!

Names

In the midst of mourning the loss of second peer in less than two years - very close friends both - I started thinking about how best to honor their memory. With Paul Benson's passing I vowed to live my life as truly and honestly as I could. The best way to honor his memory was to live the life of an officer and gentleman, though I'm not an officer (and some may argue not a gentleman either). With Paul Mooney's passing this weekend, I was again in retrospective mode and felt that I could be better read in Classics as he was and show the grit and determination he faced while battling cystic fibrosis. Both individuals were very different, but both exhibited traits that are worthy of emulation.


With a young son with asthma and a best friend who just died from cystic fibrosis (and another college friend having passed from the disease many years ago), I have decided that my few charitable dollars going forward will go to - in addition to the horse rescue groups I already support - lung and breathing related charities. There are many worthy organizations that try and stop hunger, try to eradicate cancer and alleviate the suffering of people both here and abroad. These all resonate, but my life has been, and is still, deeply affected by these diseases of the lungs, so that is where my focus will go moving forward.


Looking ahead a bit to my horse future, I know that I would like to breed race horses or at least buy an unnamed yearling or two - or more! There are many interesting and inventive ways to name a racehorse. You can play off the sire and dam like Fizzy Pop (Slew Gin Fizz/Pop Pop B B Gun) or you can name a horse after a family friend (Colonel John) or you can go with a hobby related name (Azeri - an aviation checkpoint). You can even name them after one of your favorite albums like Zenyatta (The Police album Zenyatta Mondatta). The first two horses I get to name: Dr. Benson and Estastisticos. Enjoy, my brothers. May they be champions for you someday.

Paul Mooney: October 27, 1965 - December 5, 2009

The note came via a fellow fantasy basketball league member: "Should we still play? Paul died early this morning." It was out of the blue-ish. My friend, Paul Mooney, had cystic fibrosis and had already survived a double lung transplant performed over a year ago. Recovery looked good at first, but over time he began to slide. The last month was hard for him and he kept in contact only through e-mail or instant messaging chat. His last "Facebook" post was, "Paul Mooney closed on his home. Married. Bought a Lexus. Life could not be better." It's the life he deserved, but not the life he got.


"Stats", as he was known in Colby College community, and I met in the fall of 1983. We lived on the same floor as freshmen in Mariner Hall. He was my first friend there and became my closest. His nickname was derived from the vast warehouse of sports information that he kept in his head. When asked about it, however, we made up a couple of different stories, mostly for the benefit of girls...of course. The first was that when his younger brothers (affectionately referred to as The Gremlins) were learning to speak they could not enunciate "Paul" and it came out as "Stats" so it stuck. Seriously, you would NOT believe how many freshmen fell for that! The other was that he was born in Mexico and his given name was Estasticos Munez and when he crossed the Rio Grande he Anglicized it to Stats Mooney so he'd fit in. Hilarious...


Stats and I burned up the racetracks when we were in college. We fueled our love for the game at the harness tracks in Lewiston and Scarborough. One of the best weekends we ever had - sober - was a weekend trip where we started Thursday night at Lewiston, Friday night at Seabrook greyhound, Saturday afternoon at Suffolk Downs, Saturday evening at Wonderland greyhound and the Sunday opening day at Scarborough on the way back to school. Our home base was his parents house in Manchester-by-the Sea, Massachusetts right on the water. Paul loved it there and it is an absolutely gorgeous spot. All in all, for two guys into horse racing, it was a dream weekend - at least when you live in northern New England.

We went our separate ways after college, like everyone does, but we kept in contact all the time. He was an usher in my first wedding and when I up and moved to Guam, he accompanied me half way across the country to drop my car off in Los Angeles. I picked him up in Chicago and he flew back from Las Vegas. Along the way we stayed in Santa Fe and spent a completely sleepless night in Vegas before he left. In Santa Fe we had a hard time finding a room because there was some art festival going on. We finally found The Thunderbird Inn that had a few rooms available. In classic Santa Fe tolerance the innkeeper asked us if we wanted one bed or two. We glanced at each other and without missing a beat, Stats asked him sincerely and very matter of factly if we looked like one-bedders. We opted for two beds and had a helluva laugh over it. One-bedders became a lifelong part of our vocabulary.

When I moved back to the States, we still stayed in touch and then, mysteriously, we completely lost touch. I knew he was in Chicago somewhere and he knew I was in LV somewhere, but we never connected. The last call I had made to him was letting him know that my family was heading back East for a month and that he should come on out and stay a week or so with me. He was teaching at a community college around Chicago and he had the summer off. It'll be a blast, I reasoned. He didn't call back and the next time I tried the number was out of service.

Fast forward about 2 years ago and I get an e-mail from him. He had tracked me down using the Internet. I was on a business trip in St. Louis and called him immediately. We spent the rest of the evening catching up. Literally the entire evening. I completely drained a cell battery and had to plug in the phone to keep on yakking. It was that call that I learned he had cystic fibrosis. He never mentioned it to anyone in school and he just lived his life. A lot of the goofy chances he took in college made a helluva lot more sense now - he knew he was living with a death sentence, but the rest of us didn't. I was actually incredulous when he told me. We learned early on that we were born about 12 hours apart straddling October 26th & 27th and I knew the life expectancy for cystics was not into your forties. In fact, a dear friend, Susan Brigham, was a senior when we were juniors and she passed from the disease about 3 years out of school. We kept in touch again from that moment forward. Until the message today.

As a parent now, I can't imagine what his parents are feeling today. I heard that his mother was with him when he passed - I cannot imagine anything more painful for her. He fought harder than anyone could have expected and lived longer than odds dictated (he LOVED that). I heard that he brought comfort and peace into the lives of many cystics and was a source of inspiration for all who came in contact with him and that does not surprise me. He died peacefully at home in a favorite chair. He lived to see the Red Sox win not just one, but two, world championships (Game 6 of the 1986 Series was our collective 21st birthday - they OWED us!) and he loved that as well.

My life is a better one because Paul Mooney was in it. While it doesn't make it any less painful for those of us left behind, I know he's breathing easier now and there is no more pain or disappointment or setbacks. Only peace and love. Rest in peace, my friend.