Now that I have my mojo for running back I now have to do something about raising money. For those of you that don't know (and I can't believe that anyone who actually reads this blog doesn't) I run to raise money for a great organization called Neurofibromatosis Inc. Northeast. This is an organization dedicated to finding a treatment and the cure for neurofibromatosis by promoting scientific research, creating awareness, and supporting those who are affected by NF. Why does this matter to me? It matters because I have a 17 year old son that is afflicted with this disorder. Max is a great kid that has lived his whole life battling this disorder. On the surface you might not even know that there is anything different about Max but believe me, this disorder has taken its toll on Max and everyone who loves him. He does very well in school and he is set to graduate this spring. (am I really that old??) He is planning on attending college this fall and we could not be prouder of his accomplishments. As strange as it may sound his mother and I have learned to appreciate the little things in life, the milestones that most kids reach, so much more because of Max. He has always been delayed, not in his intelligence, but in his maturity level. He is not your typical teenaged boy. He isn't girl crazy, he is does not spend any time at all on any social media site (he has a Facebook page that he almost never checks) and he doesn't seem to be interested in taking the car out and just riding around with his friends (I, of course, am assuming that this is something that kids still do) But, during his life we have watched him do things that we honestly never thought he would be able to do. We will never forget the day when one of our twins came rushing in the door to tell us that Max was riding a bike. It doesn't seem like much but because of his disorder Max has always had balance problems. But Holy Crap!! There he was, pedaling away. It was almost overwhelming.
Max has had his share of physical problems as well. His body is covered with a number of neurofibromas, or tumors, as well as a lot of café au lait spots. They don't cause him too much trouble but they are a constant reminder of how he is different and sometimes when you are a teenager being different isn't exactly what you are striving for.(regardless of what the movies tell you) He also has a large plexiform neurofibroma on his elbow that we have to watch very closely. Our biggest worry is the inoperable brain tumor that Max must live with. As a result of this tumor Max developed a condition called Hydrocephalus or a back up of fluid in his brain and even though the tumor is inoperable he had to undergo brain surgery to alleviate the back up of fluid. All of this at the age of 6. Believe me when I tell you that you don't ever want to see your child, who is barely out of kindergarten, have surgery on their brain. The wait for the surgery to be over is indescribable. A long, seemingly endless period of time where you can't stop your thoughts from drifting to the worst possible outcome.
This is why I am raising money for NF Inc Northeast. they were instrumental in helping our family deal with having a child with NF. They taught us what we needed to know and they lent us a sympathetic ear and a shoulder to cry on. It made us feel so much better knowing that there were people out there that not only understood but also cared deeply about our son and our whole family.
Having said all of this I am launching Operation 5 Squared. I am vowing to finish the marathon in under 5 hours and, more importantly, I am vowing to raise $5,000 for the great people at NF Inc. Northeast. Neither goal will be easy to reach but neither goal is out of reach. I need your help.. I need you to donate ANY amount of money that you can. No amount is too small because every amount counts. I am constantly amazed by people. It seems like all we ever hear about on the news is tragedy, death and the dark side of the human animal. But we are lucky enough to get to see the compassion, generosity and beauty of the human soul. That is why I believe that this goal can be reached. So please donate and tell your friends, family and strangers on the street to donate.
You can donate one of three ways:
- First - Go to my CrowdRise Fund Raising page here and leave your inspirational words of encouragement (or scathing insults) along with your generous donation.
- Second - Make out a check to NFNE and send it to NF Northeast - 9 Bedford Street - Burlington, MA 01803
- Third - You can make out your check to me and I will make sure it gets to where it is supposed to.
If you want to visit NF Inc. Northeast you can visit them here.
Also take a look around this blog for some surveys and other fun stuff that I will post over the next couple of months. Take a read of the book that I am writing and feel free to let me know your thoughts and opinions. I have posted the first several chapters on this blog.
Thanks for listening and please come back and visit often.
Til next time...