Hey, and welcome to the first of my ramblings for 2015. I must apologize for having been lost in never never land for way too long but the end of 2014 was not exactly as smooth as I might have liked for either myself or my family. However you’re not here to listen to me whine; it’s Monday and that makes it time to talk about some aspect of Autism or other Special Needs children and the way they impact our lives as part of our family. So allow me to dust off my soap box (let’s see, now where did I put that bloody . . . ah! There it is) and we’ll be off!
Now my regular readers (if I have any left after my unintentional hiatus) will probably be expecting me to do something dealing with Autism since the whole reason I started this company and it’s web site was to help raise money for a Special Needs Trust for my autistic son as well as raise awareness of how autism effects the lives and needs of a family, but this time I have something a little different in mind for you. Imagine a lady running through the streets of Pittsburgh in the middle of February dressed only in her underwear! It can’t be more than 36 degrees at most, and that’s only if it’s an exceptionally warm year. Otherwise it will be in the teens or lower 20’s and there’ll be plenty of snow all around! Got your attention yet? Good! I thought that would grab you. Can’t possibly be real many of you are saying, right? After all, no one’s crazy enough to pull a stunt like this, can they? Well surprise, surprise dear reader, it’s not only real, but the sister of an old friend of mine will be doing exactly this on Valentine’s day to help raise money and awareness on the behalf of a 3 year old girl who suffers from Neurofibromatosis or NF for short.
An old friend of mine from college days, Trudy, first alerted me to what her sister Janie was planning via a Facebook post asking her friends to help support Janie in this crazy endeavor by pledging money at a web site run by Cupid’s Undie Run; and of course I had to know more. Seems the three year old daughter of one of Janie’s friends has NF2, and so she decided to join with Cupid’s Undie Run to help raise money to fund research on this fairly rare disease. So I started to do some research on it since, truthfully, I had only ever heard of it once or twice and never really stopped to learn all that much about it before this. Seems Neurofibromatosis is a genetic disorder that comes in three general “flavors” or types in which tumors tend to pop up on the nervous system of those who suffer from it. Depending on which type of NF a person has, other problems can also occur, sometimes as a direct result of these normally benign tumors, but sometimes not. Among others, some of the associated problems this 3 year old Janie is running to support might look forwards to include: deafness, vision problems, problems with her sense of balance, facial drooping, and weakness in her arms or legs. In short, many of the same problems one might associate with a stroke. If she had NF1 instead, she probably wouldn’t have to worry about gradual hearing loss or vision problems, but she might face cognitive disabilities (much like my autistic son), an abundance of birth marks commonly referred to as café’ au lait spots, bumps under her skin from multiple small tumors, and bone abnormalities. In either case, pain from these tumors pressing on various organs and nerve bundles are also fairly common. Fortunately NF is rather uncommon, occurring in only 1 of every 40,000 children as opposed to autism which can be found in 1 out of every 68 children, but like autism there is no cure. These poor children are faced with a life time of surgeries and other therapies aimed at keeping the tumors they develop under control before the tumors can cause too many complications in their lives.
And thus we come to Janie Zahn and Cupid’s Undie Run. The Cupid’s Undie Run was started to help raise money for the Children’s Tumor Foundation, a non-profit organization dedicated to researching this terrible disease who manages the very impressive feat of keeping it’s administrative expenses to less than 8%, leaving a truly huge amount of the money it raises to be spent directly on programs aimed at research and helping children with NF. Cupid’s Undie Run was started in 2010 as a new twist on raising funds and awareness (people running in their underwear? Who else would come up with an idea like that!), and managed to raise over $28 million last year through runs in over 30 cities worldwide. This year, the sky’s the limit; especially if normal everyday people like you and I will pitch in to help. And so, in addition to the autism and special needs charities I already support, I will donate 5% of all sales from this website (just click on Cool Products in the menu bar above this ramble) or my portfolio at Redbubble (www.redbubble.com/people/carl1013) through till Valentine’s day of 2015 to Cupid’s Undie Run. If you would like to make a donation directly, you can either go to Janie Zahn’s page at http://my.cupids.org/JanieZahn or find a run near you by going to http://www.cupidsundierun.com. My only regret is that I don’t live close enough to Pittsburgh to be there in person. It seems a shame to help fund a modern day Lady Godiva and not be there to cheer her on.