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But on March 15, he will run 26.2 miles in the Tobacco Road Marathon.

After being diagnosed with Pompe, a neuromuscular disorder, two years ago, the second-year UNC medical student said he wants to run for those who can’t.

“I wanted to do something kind of insane, something crazy, something to grab people’s attention and hopefully inspire them to donate and contribute to the cause,” McIntosh said. “So I decided to sign up for a marathon.”

He is raising money through the United Pompe Foundation. With 10 days until the marathon, he has already exceeded his $12,000 goal.

Pompe disease is a genetic, autosomal recessive disorder, said Stephanie Austin, a genetic counselor at Duke University School of Medicine. She said the cells of people with Pompe disease do not produce enough of the enzyme needed to break down glycogen, which builds up and damages cells. Pompe disease impacts the muscle cells, and patients often experience muscle weakness and respiratory problems.

McIntosh said it often takes a long time to diagnose the disease, and patients often go through misdiagnoses. He said this was not his experience, as he was diagnosed fairly quickly.

He said part of the reason for the difficulty in diagnosing this disease is that not many people are aware of it.

About one in 40,000 people have Pompe disease

“You don’t really talk about it in medical school,” McIntosh said. “It might be on one slide or maybe one handout that you see one time, so unless you go to residency or specialize, that’s not going to be on your radar at all.”

This lack of awareness is part of what inspired him to go public with his disease at a patient presentation in front of his entire class in January.

“It’s easy to have a disconnect between what we’re learning and these conditions,” McIntosh said. “These diseases impact real people who have friends, who have families.”

Caroline Newman, a friend of McIntosh who has also been training for the marathon, did not know about his diagnosis until the presentation.

“Hearing him tell his story and have that unfold — quite honestly I was just incredibly proud of him,” she said.

McIntosh said it took him about a year to get comfortable with his diagnosis. His girlfriend, Wendy Song, said she has seen his faith help him.

“His faith lets him rest in the fact that God is in control, and he knows that through God and with Him, he can make a positive impact regardless of what his future looks like,” Song said.

But the focus of training hasn’t been on McIntosh or how the disease affects him, Newman said. She said when he talks about what he hopes the marathon will accomplish, he talks about how he hopes it will affect others.

“I’m honestly honored that I’m running next to him,” she said.

McIntosh said he just wants to be an inspiration to those with Pompe disease.

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“It’s been a long journey from me first being diagnosed until now,” he said. “It’s been something truly remarkable to be a part of.”

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