Julie has been one of my wife’s best friends for years and she suffers from Ehlers Danlos Syndrome. In Julie’s own words, “EDS is genetic connective tissue order that causes defects in the collagen or glue that holds our body, especially joints together.” This is a very simple explanation of something that’s a lot more complex. Over the past year Julie’s symptoms have gotten a lot worse and she’s struggled to get things figured out after meeting with doctors. She’s finally narrowed down some of her problems and has found out that she has Chiari Malformation and Craniocervical malformation (a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.)
So now the good news. Julie has been approved to meet with one of the few specialists in the world that can help her with some of her problems and in mid August she gets to travel to New York to meet with him and have two surgeries. She needs help getting there, and that is my reason for this post.
In 17 days Julie has raised almost $4300 with a goal of $5000. This money will help cover travel and other expenses for the two weeks she is there. She is hoping this will be enough and may need more. My goal is to raise $1000 for her, and I will do whatever I can to make it happen.
So the plan…
On Saturday July 27th I will be running the Idaho Falls M.A.D. half marathon and would like to use that opportunity to raise awareness and funds for Ehlers Danlos Syndrome. The Mascot for EDS is a zebra and I would like to run this half marathon in zebra attire. I do not have a zebra costume and that is where you all come in. I need you to purchase a stripe. The more stripes purchased the better the costume. A minimum of $10 a stripe but no maximum so feel free to be generous if you can. You buy the stripe, I make the costume, and I will even write a name, phrase, or saying of your choice on the stripe. 100 stripes = $1000 that’s 3 days without a starbucks, 2 meals at home instead of fast food, or even better riding your bike to work for a week instead of driving. 🙂
Now for a little motivation. For the first few people who contribute to this cause I have some ummmm… “prizes”
$30 donation = 3 pounds of my famous homemade fudge (10+ flavors to choose from)
$30 donation = 1/2 batch of my famous homemade caramels
$50 donation = Map My Run. Get a map, pick a run for me, anywhere in Pocatello Idaho. As few as 1 mile, as many as 20. Have me run around the walmart parking lots for 100 laps, in front of my house for 3 hours straight, all around town, or something more scenic. (it’s all your choice)
$20 I’ll print off a beautiful color copy of your favorite #onmyrun photo from facebook and instagram and mail it to you. (I will have a gallery to choose from)
$100 = I’ll shave my head bald, bic it so it’s shiny, and let my kids draw a nice picture on it with the dry erase markers. (Photo included) (only 1 available)
$40 = 10 mile run in an outfit of your choice. (Mostly your choice, I do draw the line at dresses and sports bra’s but I would wear a tutu or other things in pink. Not that I prefer pink 😉
I may add to the list if I can think of anything else.
Please email me if you’d like to help, @ email@example.com and lets make this thing happen.
Oh and one more thing, because of her illness Julie has gone to school to be a Preschool Special education teacher but has had to give up on that because of her illness. She is now working on a masters in Counseling and Career development and is going to use this to pursue a doctorate that will help her focus on working with and helping adolescents who live with chronic conditions. So you can know that your little bit of help for Julie will be passed on to help many others.
Thanks for taking the time to read this.
PS. If you want to take a much simpler route, you can also go directly to Julie’s fundraising site and donate.