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 4,250 miles – a few hundred of those in Portugal – and raise $22,500 (I am pledging to match the first $4,250 dollar for dollar; I’m ALL IN). All monies raised go towards research to find a cure for dystonia. Ready when you are! 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 ($42.50)
- KOMs – $.10 per mile ($425)
- Any level of help is appreciated!
Thank you Donors!
Eileen Cosenza
Good luck to you, Jon! Thanks for riding for dystonia research and awareness!
Tim Nicholson
Anonymous
Jon Davis and Evelyn Rubak
Gauri Bhatnagar
Thinking of you and your story gives me great inspiration. What a joy it was to meet you! Will do all the things. 🙂
Virginia and Allen George
Robert Gross
Michael Hartzmark
Jared Davis
Julie Rosenbaum
Jason Luban
Definitely let us know your route – if it's in the south, perhaps we can join you or at least provide a rest stop. I guarantee that we will be the only two DYT1+ DBS … Read more
Definitely let us know your route – if it's in the south, perhaps we can join you or at least provide a rest stop. I guarantee that we will be the only two DYT1+ DBS recipients for miles.
Janet Thrope
English