NF Challenge

In case any of you are wondering....THERE WILL BE NO NF CHALLENGE THIS YEAR. Why? I have no idea really. All I know is that the NNFF (National Neurofibromatosis Foundation) changed their name to the CTF (Children's Tumor Foundation). My friend Kate and I were ready to run and maybe even a friend of hers. When I looked up the exact date it was not listed under Washington events on the CTF website. However, she saw it listed on the Northwest Runner website. LOL I started to wonder if I was going nuts! I also looked at the September schedule on the NWR site and saw it listed. I just could not figure it out. After careful inspection I realized the NWR had posted the schedule from a previous year and had the NF Challenge on a week day which just could not be possible.

For the past 3 years my family, friends, and I participated in the event to raise money for a cure for NF (both NF1 and NF2). I have NF2. Every year the funds are divided up between the two diseases and a researcher is awarded a grant for their project in continuing scientific advances toward the genetics and pathology of either disease. However, I had noticed a trend that more scientists seemed to be awarded for the research of NF1. Therefore, I had a portion of the funds I raised allocated specifically toward research of NF2 (The Adam Goodkind Fund).

This was a very important event for me as well as fun because it generally fell on or around my birthday so we would celebrate that too. No, I am not some great runner. The race meant a lot to me because of the fact that I was still able to run. Even if I did not enjoy the actual run (huffing and puffing along) I kept in my mind the people who could no longer do the same and thus I was running for them. It meant more to me then just handing over some money. It is hard to explain.

I used to also do the Seattle Superskate where one would rollerblade 25-26 miles to raise the necessary funding for Multiple Sclerosis Research. There would be moments in the course where my back would spasm and I felt great pain but when that would happen, I would think of the people who were never so lucky to be able to try out a pair of rollerblades or had their sense of balance and coordination robbed from them. Those moments are what kept me pressing on and it was an incredibly rewarding experience to cross that finish line (an honor). I did the Super Skate as long as I could (4 years) and then last year I sprained my ankle right after treatment. I thought maybe it would be possible this year but my balance declined severely and I have never been able to put the blades back on again. (anybody want to go for a ride in a wheelchair so I can try it out and push you along?)

In any event, I was fully prepared to run even though it is tremendous work now. The race had the option of a 3 mile and 6 mile. I always did the 3 mile. Last year I ran and I was so worn out that I think I collapsed when I crossed the finish. I remember my brother and dad being there.

I honestly have never run 3 miles since the treatment. The most I have done is about 20-25 minutes. It feels like I am running my heart out but in all honesty I think I am just jogging. It is hard because my eyes are bouncing up and down like I am running while looking through a video camera. Thus I have to look down at the ground and not the trail or anything around me. At the same time I have to concentrate all my energy into trying to coordinate my body and keep from tripping. I have run (jogged) recently (about 3 times over the past week and a half). I can make it half the distance that I normally walk. On a nice cool fall day it does feel somewhat good.

Special thanks to those who have participated with me over the years: Harley, Mom and Dad, Yumi and Dan, Chris and Darin, Kate, Michelle, Scott, and Denise. Also, I would like to thank the wonderful friends and family who could not be there but showed their loving support by helping to sponsor me and raise funds. I had an overwhelming response last year and I sincerely thank you from the bottom of my heart. I will never forget your gracious act of kindness! For those who have shown caring concern, accepted me as I am, helped me even when I was embarrassed to have help, and have just been there for me in many ways, I thank you too. NF2 is not pleasant but I thank God everyday for bringing people like you into my life. I feel very blessed!

I need to figure and sort all of these things out here but at some point if you are wanting to help with improving the chances or quality of life for someone with NF2, you can go to this website: http://www.advocurenf2.org/

The name stands for "NF2, Advocates for a cure". From the homepage you can learn more about NF2 and in the left column is a heading called "How to Donate". Since this is an indiscriminatory disease, anybody of any race and any age can be affected. Therefore there are organizations worldwide that you can donate to.

I personally like to contribute to the following fund:

• Adam Goodkind NF2 Research Fundc/o Childrens Tumor Foundation95 Pine Street, 16th Floor, New York, N.Y. 10055