Omaha woman speaks out in Washington on rare disease

WASHINGTON (Gray DC) - An Omaha woman traveled to Washington, D.C. this week to speak out for her and her two boys during Rare Disease Week on Capitol Hill. The three suffer from Jansen’s Metaphyseal Chondrodysplasia, and she says she won’t stop fighting for a cure.

Neena Nizar and her sons are three of 22 people in the world who suffer from the progressive and debilitating skeletal deformity.

"My whole life is on standstill just for my kids to fight this battle,” said Nizar.

She was misdiagnosed for 32 years, undergoing three dozen surgeries. When she had her two sons, she realized she had passed on the disease. So she came to Washington to speak with top health officials who she says know how to find them a cure.

"I feel so empowered and I know that my boys, and myself, don’t have to go through this for nothing,” said Nizar.

Nizar says she thinks the cure for their disease could be the gateway to a cure for more common diseases, like osteoporosis. She thinks legislation is key in this fight, so she had a meeting with Senator Ben Sasse (R-NE) that addressed just that.

"Nothing’s going to be possible without the backing of legislation,” said Nizar. "There needs to be not just attention for the rare diseases that form 7,000 numbers, but for ultra rare diseases that could potentially unlock treatment to more common diseases.”

“Research is critical and so is preventing Washington from putting bureaucratic layers between patients and cures,” said Senator Sasse in a written statement.

Neena’s story struck a chord in Washington, with researchers and legislators alike.

"I think our journey has been a real eye-opener for us and for everybody who’s been following us,” said Nizar.