Jon Davis – #Riding4Us
Help me find a cure for dystonia – a rare neurologic disease that robs over 250,000 people of their ability to move freely – by making a donation to #riding4us. What is #riding4us you ask? My story will help answer that.
I was diagnosed with dystonia when I was 13. I came home from school with a note from my teacher saying that she could no longer read my handwriting. I taught myself overnight how to write with my other hand. A progressive disease, by my 30’s, I could no longer ride a bike, a lifelong passion (dystonia made it such that I couldn’t keep my feet of the pedals) and had an awkward walk . By my early 40’s, I could barely walk or stand for any length of time.
Drugs didn’t help. Physical therapy didn’t either. Dystonia is a cruel foe, indeed. My last chance of getting relief – my Hail Mary pass if you will- was a procedure called Deep Brain Stimulation (DBS). It involves inserting wires into your brain and hooking them up tp pacemakers in your chest. A medical professional “tunes” the system through a series of adjustments all in the hopes of regaining one’s freedom of movement.
I had my surgery done in 2011. In 2012 I hopped on a bike for the first time in over a decade, and took my first “bionic” bike ride. What a thrill! SInce then I’ve ridden thousands of miles. If you met me today you would have no idea I had a movement disorder.
In 2018, I joined the Board of the DMRF. In 2023, I started the #riding4us (the “us” being those with dystonia who don’t enjoy the freedom of movement we all take for granted) campaign with the goal of riding 4,000 miles as a way to raise $20,000. I exceeded both goals, and rode my bike through scenic parts of Connecticut, New York, California and Scotland.
This year my goal is to ride 5,000 miles and raise $25,000. All monies raised go towards research to find a cure for dystonia. How much are YOU able to give to my cause and help stamp out this disease for good?
Suggested donations are below.
- Trailblazers – $.01 per mile ($50.00)
- KOMs – $.10 per mile ($500)
- Any level of help is appreciated!
Thank you Donors!
Andrea Goodman
Deborah Goodman
Laura Ryan
Warren Haber
Barbara Klett
Josh Huskins
Proud and honored to contribute to this cause!
Rick Bosl
Stefanie Jackson
Jon is a real hero for the Dystonia community! I’m proud to call him a friend!
Anonymous
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