We need Federal Grant money to supplement the generous private donations to

In 2008, our Congress authorized $17.2 billion in Federal Grant appropriations. It’s time they share the pork with the zipper heads.

Please contact me if you’re willing to help me lobby. I have no experience, but I’m willing to learn.

We need research!!!!!!!!!!!! Last week!



  1. Anonymous Said:

    I LOVE your blog, thank you for sharing your stories!!! I don’t know if you remember, but we met at the ASAP conference. I’m the redhead and was there with my son, daughter, and husband. I would like to help in any way I can, but I have no idea where to even start. If there is something, anything you know of that I can do that would help, please don’t hesitate to let me know!!!
    Thanks again for sharing your blog!!
    Lori Tutrow

  2. Dana B Said:

    Hi….Wow….Your writing style is awesome and you know, I have felt like you, that I have known for all of my life that I was different, that there is something wrong with me…and I was diagnosed with a syrinx June 08, from C5-T10, which to me is HUGE, but again, dimwitted physicians dismiss me. I have been hearing, “Oh, don’t worry about it”….HA….My brain seems safely inside my skull as far as I know, MRI looks un-saggy, however I am concerned that my lower cerebellum is all crunched up inside my skull, creating Chiari 0; I can relate to most of your symptoms and I have a few extra that according to my PCP, “Are all in my head” YUP! You’re right!!! HAHA….
    How can we educate these physicians without pissing them off?

    My best to you and that you finally got your diagnosis and surgery! I hope I can be so lucky some day!


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