Run for NF

Dear friends,

Some of you may not know this, but I am affected by a genetic disorder called Neurofibromatosis. Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. My condition is fairly mild, but I do have an occasional flare up. (We do not yet know if Sebastian has NF yet, he will be tested this summer at Children’s Hospital, he has a 50/50 chance) For more information about NF, go to

Since many of you are active in the outdoors, I am asking you to support NF by participating in an NF Walk/Run in your area. It’s a great way to do what you love and raise money for NF too!

Here in Seattle, the NF Walk/Run is at Marymoor Park on June 1. I am hoping to convince Alan to participate – which means getting all three of us up and in Redmond early Saturday morning! (I might have to have one of you without a newborn do this event for me!) If you are interested in participating in the SEATTLE event, please go to for more information.

Love to run marathons? A lot of you have a million miles on your tennis shoes! Let your passion for running fuel and strengthen the avenues that improve education, support, appropriate medical care, and valuable resources for those that live with NF. Check it out at

Something else that is VERY EXCITING in raising money for Neurofibromatosis is The USA National Doodle Day Go to for the scoop. Pass the fun on to as many folks as you can. Bidding starts on eBay from May 8th – 18th. Proceeds go to NF, Inc. Bid on something special from Gillian Anderson, Candice Bergen, Jeff Bridges, David Duchovny, Ellen DeGeneres, Goldie Hawn and more! See doodles from singers like Davy Jones and Micky Dolenz from The Monkees, or David Cassidy… plus more. Check out best selling authors James Frey and Neil Gaiman, as well as Helen Thomas, author and award winning journalist. And yes… still more! A fan of Doonesbury? Along with other popular cartoonists, we have a doodle from Garry Trudeau, creator of Doonesbury. Please visit and be ready to bid May 8th.

If you are unable to participate in these events but would like to donate to NF, please contact , a member of our Seattle group and she will assist you.

Thank you so much for your support. Some day we will find a cure for NF.