Julie Sullinger wrote -
Why I dash.. I dash because after being diagnosed with Idiopathic Intracranial Hypertension 17 years ago I finally feel human again! I was diagnosed in 1999 and was able to maintain with medications for a couple of years, but the side effects are basically 101 ways to kill you and stopped working. I ended up with a Lumbar Shunt in 2002, but needed surgery to revise this shunt approximately every 2 years because of different malfunctions. And, I was diagnosed with a Chiari Malformation in 2009 because the pull of the shunt started moving my brain into my spinal column. It took a few years from here to find a surgeon that understood my conditions and was willing to work with me. And, just a few more tests, surgeries, and years later he was able to figure it out.. I had a Ventricular Shunt implanted in May of 2015 and feel the best I have for decades!
I dash because I had to move home with my parents at 30 and was unable to work for several years. I dash because it took years for a proper diagnosis and decades for a proper treatment to be developed, but it's still not perfect and definitely not a cure. I dash because I've had to rely on family and friends (who wouldn't have had it any other way). But mostly, I dash because there are limited resources and supports for people with rare diseases and some of them aren't lucky enough to have family and friends like mine. You are truly the best miscreants a girl could ask for.. SMOOCHES!!!
Now, onto business.. Net proceeds from the Virtual Denim Dash 5k will go directly back to the Rare Disease Community through Global Genes' RARE Patient Impact Grant, which provides funding to non-profit organizations to develop programs and supportive services. That's what makes this Dash so different from others, the funds you raise through the Denim Dash go directly into a program that positively impacts the rare community!
About the dash.. Supporters from all over the world will run, walk, swim, bike or roll 3.1 miles to support the RARE Community. The Denim Dash 5k for Rare Disease is virtual, so you have the flexibility to participate wherever, whenever is most convenient for you as long as you Dash anytime between March 19th-27th.
If you want to dash, just choose Malady Miscreants as your team when you register. Don't want to dash, but still want to participate? No problem! Simply create a fundraising page and get started. Not feeling it this year, never fear.. donations are also welcome and much appreciated!
Please join us in this incredible opportunity to raise awareness for Idiopathic Intracranial Hypertension and Chiari Malformation, all while supporting the Rare Disease Community as a whole through raising funds for Global Genes' RARE Patient Impact Grant.
Thanks, and Happy Dashing!