Friday, December 4, 2009

Why I Ran 1000 Miles

My name is Gara. I have a four year old niece, Delaney. Delaney has been diagnosed with Alternating Hemiplegia of Childhood ("AHC"). Unfortunately, despite the name, AHC will affect Delaney the rest of her life. AHC affects the neurological system and causes temporary paralysis in the limbs and "episodes" that mirror seizure activity. Only about 400 people in the world have been diagnosed with the disease and therefore there is limited funding devoted to researching treatments and a possible cure. A diagnosis of AHC is frightening and at this time provides families with very little guidance on what their lives will look like. Luckily, there is a team at the University of Utah, as well as other specialists around the US and Canada dedicated to finding a treatment and cure for this disease. Its my mission to raise as much money as possible to fund this research and be a voice for everyone with AHC.

I ran 1000 miles from January 1,2010 until October 21, 2010 (Del's 2nd birthday!) to help raise awareness about the disease and raised about $20,000.

After my running, I moved on to baking to raise money for AHC.  For six months I baked several batches of cookies a month and sent the cookies to individuals who had pledged donations to the AHC Foundation.  Now I'm cooking.  If you end up walking away with a recipe (and like it), I'd urge you to return to this cite or and make a donation to AHC.

I live in Chicago and Delaney and my sister, brother-in-law and Dels baby sister Mara live in Vermont. Being so far away leaves me feeling helpless and of little use to my sister and Delaney. I just want to keep finding ways to help!


  1. The website looks great. Del is adorable! I'd love to run with you sometime if you're looking for company...

  2. Hi Gara.
    Just took a look at your great website. My name is Ragga and me and my husband have a 4 year old girl, Sunna, who is diagnosed with AHC. We live in the capital of Iceland, Reykjavik.
    What you are doing is so important and I wish that I could run a few miles with you....
    All the best raising the money. It is going great!!!
    Take care
    Ragga and Sunna 4yr.