Family of local teen with rare disease raises money for a cure

Virginia

Thus far, the family has raised $270,000 of their $350,000 goal

STERLING, Va. (WDVM) — Not many people have heard of the disease NBIA-MPAN, but one Virginia teenager who has the condition is raising money to find a cure.

Sixteen-year-old Ryan Alam was diagnosed with the neurodegenerative disease, which creates iron accumulation in the brain, in November 2018.

There are only 500 known cases of NBIA worldwide, and 100 known cases of the subgroup of the disease, MPAN.

“Because this condition is so rare, there’s next to no money going towards research,” said Faisal Alam, Ryan’s father. “They don’t get any attention and it often times falls on the parents to make a difference.”

The family decided to start a campaign in April 2019. They are working with Children’s National to help raise money research.

Tuba Alam, Ryan’s mother, says that despite his condition, his goal in life is to help others like him find a cure so that they can live a full life.

“If you asked Ryan what it’s like living with this disease, he’s never going to tell you that it’s difficult. If you ask Ryan, he thinks he has a great life and he’s very thankful for everything that he has,” said Tuba Alam. “As parents, we see what he’s going through and it is very difficult. But he will never admit that.”

Thus far, the family has raised $270,000 of their $350,000 goal. If you’d like to donate, you can visit the family’s fundraiser here.

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