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Erwin Jackson Brings Dystonia Fight Home

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A well-known Tallahasseean is escalating his crusade to conquer a devastating disease.  Tom Flanigan reports part of that effort involves a gala fund-raiser that takes place next week.

Erwin Jackson is a successful businessman.  He is a relentless critic of corruption in local government and ran for mayor himself not that long ago.  But then, at age sixteen, Jackson’s younger son Brian was diagnosed with Dystonia.

“He was watching the FSU/Miami game five, six years ago and he was laying on the couch and that was a big deal.  We’d always go to the game but then we stopped going because he couldn’t go so we’re watching the game at home.  He looks up and he says, ‘Dad, you know I’m counting on you to find a solution.’”

Dystonia, which is related to Parkinson’s Disease and has symptoms similar to Scoliosis, affects the nervous system.  In Brian’s case, it appeared virtually overnight and often left his body painfully contorted. 

“I can fix things.  I’m a damn Mr. Fixit.  And I’m steady, if it doesn’t work this way, I’ll go the other way.  With this, I didn’t have a damn clue.”

Although Dystonia has no cure, there are treatments.  One is called “deep brain stimulation”.  Brian’s surgery to implant the electrodes  was done in a New York hospital.

“They were drilling through his skull while Brian is laying there talking to the Dystonia rep about the equipment.”

The surgery was a success and Jackson says the effect was instantaneous and little short of miraculous.  Brian graduated from Florida State back in May.  Now he has a job with Medtronic, the very company whose technology made the miracle possible.

“It turned out fabulous.  He’s down there working.  He had like a six-month training program so by the middle of March he’ll be an official medical-trained person.”

Last year the Jackson family hosted a special Valentines Day event at Florida State’s University Center.
“We had 250-275 people that showed up.  We fixed up the tables, we gave all the women red roses.”

There was also dinner and stage entertainment all for a special cause.

“Last year whatever money they raised I matched it and we sent it to the Dystonia Research Center in Chicago.”

But this year, the beneficiary is much closer to home.

“The Brian Jackson Dystonia Research and Discovery Program at the F-S-U College of Medicine.”

Also different this year, instead of a single evening, the event will be held on two nights, February fourteenth and fifteenth, again at the F-S-U University Center Club.  Cocktails, Dinner and the musical production, “I Love You, You’re Perfect, Now Change”.