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Stamford Teen Not Slowed by Rare Disease

STAMFORD, Conn. — Howard Rothman remembers climbing to the top of the stairs as he was leaving Yankee Stadium back in September 2010 and turning back to find his 15-year-old son lagging behind as he struggled to make his way to the top.

Neither knew it at the time, but Michael has chronic inflammatory demyelinating polyneuropathy , or CIDP, an autoimmune disorder that causes nerve swelling and irritation, leading to a loss of strength and sensation, according to the U.S. National Library of Medicine. Causes vary and are not always known, the website said.

“Sometimes it comes up and hits you in the face,” Howard Rothman said, recalling a couple of other instances when Michael has shown symptoms of CIDP.

Michael, now 17, is a junior in high school and has not let the diagnosis stop him from getting a driver’s license — and receiving a handicapped sticker the same day. And he has remained active in sports, serving as the bench manager for his school’s baseball team and scheduling his IV infusions for Friday nights as he watches a game.

“I may never have the stability to be a hockey player, but I do not let that stop me from doing everything else a teenager my age wants to do,” Michael wrote in a letter about the fund set up in his name.

“God forbid he miss the Rangers game,” his older sister Rachel Rothman said. Michael ran a 1-mile “fun run” with her at the end of last month.

“He rolls with what he has to,” Howard said of his son.

Howard Rothman says the scariest thing is the uncertainty that comes with CIDP and not knowing what Michael’s future holds. Although the infusion treatments Michael is getting helps, as he gets older his body won’t respond, especially after relapses, Rothman said.

To help Michael and others who have CIDP and to put an end to the uncertainty, the Rothmans have started the Michael D. Rothman CIDP Research Fund at Columbia University to find causes and cures of the disease. Dr. Thomas Brannagan and Dr. Louis Weimer, directors of the Columbia Neuropathy Research Center, believe they are close to finding a biomarker for CIDP to make it easier to diagnose, Howard Rothman said.

“They put their time behind their words,” Matt Reals, senior development officer at Columbia University Medical Center , said of the Rothmans.

They will be holding their first Run or Walk with Mike 5K on May 20 at High Ridge Park to raise money and awareness about the cause. Registration will start at 8 a.m., with the race beginning at 9:30 a.m.

The fee to register is $30 in advance or $40 for the day of the race. That includes a gift bag and post-race food and festivities. The race will be officially timed and is limited to 500 participants.

“We’re not recruiting serious athletes,” Rachel said.

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