Huntington's Disease

The title says it all.  The Chicago Half Marathon, the first race i signed up for, was all to raise money to help cure Huntington's Disease.  My dad died from Huntington's disease a few years ago.  My grandma also died from it, and my uncle, and my cousin Tonya, and so on and so forth.  Its pretty tragic to see someone who has it, and makes you feel like you are being stabbed in the gut.  There is no cure, and no treatment.  Woodie Gutherie, the famous folk singer also died from it!  Without him, people like Bob Dylan would never have been inspired the way that they were.

Its a genetic degenerative brain disorder, which is fancy doctor speak for "it destroys your brain while you are alive"  genetic means that parents give it to their children.  That means that i might have it, and my brother might have it.  Some of the symptoms are uncontrollable movements (like parkinson's disease) violent jerking/seizure like movements, choking/trouble speaking, loss of memory and reason, paranoia, delusions, depression, and suicidal tendencies.  Alot of HD patients kill themselves, because it is so hard to sit there and die.

I don't know if i have it.  They have tests available, but with no treatment, it would just be something that would depress me, and ruin my "happy years".  The worst part is everytime i knock something over, trip, or am suspicious, i start to worry that it is symptoms manifesting themselves.  Most likely though, it is just that i drink alot, and am a terrible runner.  And the paranoia has actually been right 9 times out of 10, so i think it is more psychic ability than anything.  Now and again i will be doing various things to embarrass myself and raise money, so feel free to contribute.  The biggest issue is awareness.  Nobody donates money, because no one knows what it is, or cares.  SO, please read a little bit about it:

Or, put your money where your mouth is and run the Chicago Half Marathon with me this year.  Maybe you'll even beat me.  Maybe.  (You will probably beat me.)  I am in charge of organizing the group, so feel free to post here, click on the link on my blog, or email me at  Even if it's just to say hi!

Tell your friends.  Watch episodes of house.  Go play your "Alice's Restaurant" by Arlo Gutherie record.  (Oh wait, i'm the only one who has an "Alice's Restaurant" record?)  See if there are people in your community.  And think of me: The girl running her ass off very slowly and sometimes pathetically to try and find a treatment to save herself and her brother.  And, you know, all those other people.
Whoa.  a picture of me without drifit.  Treasure this.  


  1. Wow! I had never read this section if your blog before!!! The disease is awful, but having the reason to run is awesome! I ran my first marathon last year as a tribute to my mom and raised about $6000 for the Juvenile Diabetes Reasearch Foundation. While it didn't make losing her any better, it did help me find myself again and help me find a "new normal." Anyway, I just wanted to acknowledge your awesomeness and to tell you how great I think your fundraising is!!!!

  2. I am so sorry Sara I had no idea about your father or your race proceeds.

    I tutored a 56 year old man in college with Huntingtons' He is doing great today!

    I raised over 5000 for cancer research for a walk I did way back! you got this!!!