Wednesday, February 18, 2009
So it started last week on a train ride home from DC, after a successful NF lobbying trip. I bought a running magazine, Marathon and Beyond, and was looking for the Great!! group photo of Run4NF group in Buffalo from last May. I stumbled on an article written by a guy who did a 5 day run in Asia I think. I was quite amused at the story, some of it I found a bit pretentious but the adventure I thought intriguing. Then the seed was planted, one left there by my friend Amy months ago, an ultra, it is time to consider an ultra. A 50 mile run. Now I call it a run because I will not race 50 miles. I never even really race marathons. I actually just race against my own past times. But after 7 or so marathons I have now accepted that I can in fact run 26.2 miles. Sometimes I do it better than other times, but I can do it. I don't really know if I can run 50 miles and I have wondered for the past 2 days if I felt this way as I slowly committed to running my first marathon in 2005. I know it is part of a process of making peace with the ugly training that lays ahead. But as my friends and family have come to know about me...for Run4NF.org I will try anything... running, biking,.. so this is the first of what I expect to be 9 months worth of blogging. Not solely about running, but about NF too. peace, debbi
Monday, December 22, 2008
My holiday wish this year is that all those suffering from health difficulties have triumph over their struggles. I think I have become slightly numb to the mounting numbers of those around me who are suffering. NF has done this. We learn to filter out the less dire in order to pay attention to those truly in need. I know young men who are much too young to be battling cancer. I know children having their first surgeries with a second one already on their calendars. Each family drowning in their fears, needs, and frustration with NF research. My daughter is healthy, or as healthy as they come with NF at 5 yr. old. But I am not ignorant. I know each day we have with no complications is a blessing. But even a prognosis of scoliosis would not rattle us now. It would be more inconvenient than heartbreaking. I am troubled by the growing numbers of folks with NF that I know who are facing more challenging situations. Research can not happen fast enough. I add to my prayers that the Gov't continues to support their funding for NF research and that the new administration sees fit to give us more money, not less. I along with NF Inc. have spent 2 1/2 yrs. collecting folks to be more proactive in raising awareness and money. As our economy suffers through its own disease we need to still fight for the future of NF. Our battles even harder as our neighbors may be facing challenges of their own to put food on the table. But then we ask for $5 instead of $50 to help us in our mission. Did you know that 115 babies are born each day with NF? Staggering. I am grateful this year for good friends like Jodi Harrington and Jessica Stone who have made raising awareness a similar passion. I love them both. They are gifts to NF. I hope this year Run4NF.org grows in order to continue funding research, education, NF camp, and all the service NF Inc. provides to give hope to the future and help provide a livable today. God Bless.
Friday, July 11, 2008
I have never written a blog entry before. But as I run everyday I have so much I want to share with the NF community. So today being the first day that I got it together and opened a blog site for Run4NF.org. Where to start? I guess I will tell you about me. I did my first Run4NF a few years ago. I decided that I was going to make a difference. So I picked a race, put on some shoes, did some reading on how to train for a big run and just did it. I had no goal except to make as much money for NF as possible by setting a difficult challenge for myself. And everytime I was on a practice run I thought about my daughter Grace. She is now 5. I do not only run for her anymore. I run for the hundreds of amazing people I have met or emailed. I hope Grace has options in her future for any complications she might face, but when I run I think of all those who are facing complications right now I am inspired to keep doing what I am doing. If not us, then who? That is what I try to explain to people. It is our responsibility as able people to do something. So I now arrange to meet in places with others and hope they join in doing something to help themselves and their loved ones. I have faith in each of you who has read this far that you know you could do a bit more than you are doing. We all can. It is our nature as humans to do as little as possible~sometimes. But this can not wait. No one but us will make the efforts to make it better for those affected by NF. I want you to try one Run4NF event. My life is fuller for trying. Every little bit counts. And a Walk4NF or a Run4NF, both are empowering experiences. Both are actions. Through our actions the future for NF is altered. Closer to a cure, hope, something better than where we are now. More to come...firstname.lastname@example.org. www.run4nf.org