
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. When I could no longer play the cello at age 15, I turned to singing. At 30, even walking became difficult and by 40 I was heading toward life in a wheelchair.
A procedure called Deep Brain Stimulation (DBS), drilling holes in my head and batteries in my chest, gave me my life back. I could do the things I could do before I knew what dystonia was. I tell people at 35, my birthday wish was ‘I hope my dystonia goes away’. Today, at 55, it’s ‘I hope that I can go on a 100-mile bike ride’. Not everyone has the success that I did with DBS.
I have so much to be grateful for that I feel a responsibility to pay it forward. In 2018, I joined the Board of the DMRF. To help raise awareness and funds, I am endeavoring to ride 4000 miles before the end of 2023, sharing my story to raise awareness and funds to support the DMRF mission.
I will personally match the first $4000 raised. Help me reach my goal!
- Trailblazers – $.01 per mile ($40)
- KOMs – $.10 per mile ($400)
- Any level of help is appreciated!
PS – In August, I will be biking through Scotland – follow posts on social media and track my progress to reaching 4000 miles and dollars here!
Thank you Donors!
Eric Raciti
Go Jon Go!
michael Scott
Just saw your video which carol Teten shared with me. Very moving and inspirational. Wanted help in a small way. Take care. Michael B Scott and d family.
Carol Davis
We're so proud of you, Jon!
Shirley Robertson
Great to ride across Scotland with you! You are an exceptional person and it was a privilege to get to know you Cheers a Shirley & Greg
Connor Grealy
Happy to donate to support your journey and such a meaningful cause – Jenna and Connor
Stefanie Jackson
You are such an inspiration!!!
Jeff Zakim
Keep on riding! – Judy, Jeff, Nathan & Evan
Tim Bernstein
Go Jon!!
Eric Edelman
Jeff Matlow
FSU
Ann and John Wortman
Elite Design Group