It's NF Awareness Month and we've been chosen to compete in the 4 NF Stories competition through the NF Network! Simply put, we're trying to raise the most money--in one week--for NF research. What's the prize? The big prize is money raised to find a cure for this terrible disorder--but the winner also receives free registration and some travel reimbursement for the 2011 NF Symposium.
We look forward to attending the NF Symposium each year--it's even being held in one of Michael's "top ten places to see" this year--but with a new job and it being held in another state, well, let's just say that winning this competition would really help a lot. Even if we don't win, though, the money that's being raised through 4 NF Stories makes all of us who deal with Neurofibromatosis the true winners!
October 2010 Update: Well, I did it--I walked a half-marathon! We rented out a shelter at a local forest preserve, so the whole family could come out and be a part of this event. It was great!
After going back and forth several times, trying to determine a practical half-marathon in which to participate (not too expensive, not too far away, and definitely able to accommodate a slooooow walker), we decided to do what we should have done in the first place: use the Running for the Sweets as our half-marathon. We did and it worked out very well. The family grilled out, played games, and supported one another during the 6.5 hours it took to complete the half-marathon (boy, was that medal earned!). The kids rode their bikes, hubby and wife walked together, and our faithful dog trotted alongside us as we walked in a beautiful forest preserve that boasted oak woodlands, prairie savannahs, and lakeside trails.
All in all, it was a good experience. The only injuries were a thumb blister (from the walking stick) and a plantar fasciitis injury (which happened during training; it was not a problem until the last two miles or so). We were also expecting the event to take longer, so the time to complete it (while we wished it were faster) was still a pleasant surprise. We even had a friend come out to walk a 5K with us; her donation to NF research afterwards was icing on the cake!
So, that's how it went. We're planning on walking another half-marathon next year--which will also be the Running for the Sweets. It should be another great time!
February 2010 Update: I had an interesting doctor appointment recently. The doctor pretty much treated me the same way some of my acquaintances do when they haven't seen me for awhile: less like the person I am on the inside and more like the person they see on the surface. That realization, along with a friend's comments about how great she was doing exercising, led me to stop and think about my motivation for walking a half marathon. Am I doing this to lose weight? Am I doing it to be the type of person I think a "good" mom is? Or am I doing it for something more?
After some time spent honestly reflecting on just what's going on in my heart, I realized that I am doing this for me--because I want to accept this challenge. I'm doing it for my children--so they can see that no challenge need stand in their way. I'm doing it for NF research and awareness--because no one should have to suffer with this disorder.
Yes, the idea of spending four and a half hours straight of walking scares me--but so does the idea of my child having tumors all over his body and there being no cure for it. Will I be sore and tired? Yes, but so is my child after a day-long doctor's appointment where the only solution to his condition is waiting another year to see if worse symptoms develop. Do I feel up for this or expect others to understand where I am coming from emotionally? No and no--yet my son continually continues pushing past similar feelings. His example inspires me--and that is why I am walking a half marathon this fall. Hopefully, his example inspires you, too.
Thanksgiving 2009 Update: We are so very thankful for our family and friends, who support us often through their thoughts and prayers. During this holiday season, we want you to know how grateful we are to have you in our lives. Thank you for encouraging us.
We also want to share with you that we have decided to participate in a half-marathon next year. While neither of us are in shape, we are diligently working towards that goal and are looking forward to completing the half-marathon as part of our fitness goals. It should be both exciting and challenging, scary and rewarding. The event is in October 2010, so the hard-core training will begin this summer. In the meantime, we are busy making fitness more of a realistic priority in our schedules. (Wish us luck!)
November 2009 Update: We had a great Running for the Sweets 5K! Thank you to everyone who participated, even though it was a cold, blustery day and many of you had to prepare for trick-or-treaters who would be stopping by only a few hours later. Your heart and determination during the event was inspiring.
While 13 people were invited, 14 people participated--a great turnout! We are really pleased with how well the event went, too. The girls outran the boys (which they won't soon forget) and it seemed like everyone had a good time. It was also great to work off some calories and be in the fresh, open air before encountering the temptation of all that Halloween candy.
We plan on doing the Running for the Sweets 5K again next year, but at a different forest preserve. We hope you'll join us.
And don't forget that, even though the 2009 Running for the Sweets 5K is over, we're still preparing for next year's event--which means that donations are always welcome. : )
October 2009 Update: It's almost time for the Running for the Sweets 5K and things are raring to go! We are getting our daily walks in, as well as trying to squeeze in longer walks on the weekends. With just over a dozen participants attending this fun, invitation-only event, we are excited that it is only a few short days away!
Thank you for visiting our family's fundraising page for Illinois Neurofibromatosis Inc. We are currently training for the inaugural Running for the Sweets 5K, an event that we are organizing as a way to encourage and involve our friends in changing their lifestyles and raising Neurofibromatosis awareness.
As many of you know, we are avid supporters of raising funds towards research of Neurofibromatosis (or NF, as we call it). This genetic disorder can cause a variety of symptoms--one of the most common of which are tumors growing on nerves throughout the body. NF can also cause deafness and blindness (due to tumors growing on auditory or otological nerves), as well as learning disabilities, bone deformities, and cancer (besides other health issues). In fact, complications of NF relate to cancer, learning disabilities, and other health issues or disorders--so money spent on NF can actually benefit more than just the 100,000 people estimated to have Neurofibromatosis. In regards to NF, it effects both genders equally and 50% of new cases are the result of a spontaneous gene mutation at the time of conception. Unfortunately, at this point, there is no cure for NF.
You might be wondering why we support this cause. It's simple: our son lives daily with the effects of NF. Although he has a mild case and has been fortunate enough to avoid major complications from NF, his case is slowly changing to a more moderate one. At this point, he has the trademark "spots" on his skin (called café au lait spots) and "bumps" (called neurofibromas, or tumors on the nerves) and he developed scoliosis last year. He is seen annually at a clinic so that his NF symptoms and eyes can be monitored, along with an annual orthopaedic visit for the scoliosis. These check-ups make for long days, but they are vital to his continued health and he does a great job with them.
Donating through this website is simple, fast, and secure. (We know because we've checked it out ourselves.) It is also the most efficient way to support our fundraising efforts. If, however, you prefer to write a tax-deductible check, please make it out to Neurofibromatosis, Inc. Midwest .(It was formerly known as Illinois Neurofibromatosis, Inc.).
Many thanks for your support--and please don't forget to forward this to anyone who you think might want to donate, too! Every penny really does count and translates into actual research funds, so you know that your donation will be going directly towards research that will translate into a cure--for our son and for everyone that lives with NF. Thank you for sacrificing your hard-earned money by putting it towards this important cause!
And, as always, please contact us if you have any questions, either about NF or Illinois Neurofibromatosis, Inc. We personally know the people who work at both the local and national offices, keep apprised of recent developments in NF research (or have access to it), and are knowledgable about the disorder. We would be happy to answer any questions or concerns you may have.