Racing for Research Again!



Guess who’s walk/jogging for neurofibromatosis research again? You’ve got it! I landed a coveted spot on the NF Endurance Team for the New York City Half-Marathon on August 16th, which doesn’t leave me much time to train or fund raise. If you helped us raise more than $4500 last year, thanks! If you weren’t able to give then and are able to now, here’s a word from team coordinator Bob Skold on why you should go ahead and write that check:

Recent advances in NF research are moving us significantly closer to reaching the goal of FDA-approved treatments for neurofibromatosis (NF). Research grant monies are now being used to fund basic and translational research with an eye on developing drug therapies.  Dr. Bruce Korf, one of the foremost NF research scientists states, “We now more or less understand the activity of the NF gene in the cell and are beginning to use that information to develop new treatments. I believe we’re at a point where we can look forward to effective treatments for NF1, NF2 and Schwannomatosis in the reasonable near future.”

The NFET is the largest CTF program funding NF research; indeed all donations to the NF Endurance Team are restricted for use in the CTF science and research programs. The NFET continues its commitment to advancing NF Research, now providing close to 1/3 of the funds to support the annual CTF research budget.  Following last year’s record $1.2 million raised, we are pleased to continue with this level of projected funding and to apply team donations to partially fund promising and top-priority CTF research initiatives in 2009.

For more specific information please go to our Team Fundraising Dollars at Work section on our Team web page. Our Team’s fund-raising success is an investment that can offer a world of possibilities to someone with NF. We are helping solve the NF Puzzle one mile at a time, one clinical trial at a time, one potential drug therapy at a time.

In fact, the New England Journal of Medicine just published a study that promises hope for NF 2 sufferers, like Bob. He has lost most of his hearing from the disorder.

I’ll keep you posted as to my progress. I hope to raise at least $1000 and to better my time from Long Beach by at least 30 minutes. You can get to know some of my team-mates at the team blog. I’ll be contributing there as well.

Here’s the link to my fund raising page. All you need to make a difference is a credit card and a willing heart!

Here are my previous posts on NF.