ELMWOOD PARK, N.J. – On the last day of February for the past few years, Jeff Leider has been in the same place: Washington, D.C.
And he has been doing the same thing: advocating for children battling rare diseases.
The Elmwood Park father made his annual trip to the nation’s capital Monday, in preparation for Tuesday, National Rare Disease Day.
“I am just trying to get these kids chances, that’s what I am here for,” Leider told Daily Voice.
Leider’s young sons, Jason and Justin, are battling Hunter syndrome, a rare genetic disease, and participating in a clinical trial where they receive special enzymes to help them survive. They are doing well, but their treatment still must be approved by the Food and Drug Administration, he said.
According to the National Association for Rare Disorders, there are 7,000 rare diseases and disorders that combined affect 30 million Americans, more than half of which are children.
Leider said many children with rare diseases don't live past 10 or 15. That means “most families don’t have time to wait” for treatment, he said.
Leider will be speaking on Capitol Hill to the Congressional Rare Disease Caucus about expediting trials and making it easier to access treatments and medications, he said.
“There might be a chance to save people, instead of waiting for red tape,” he said.
Leider said he is fortunate his sons were put in the clinical trial. If they weren’t, Jason, 10, would probably be in a wheelchair and relying on a breathing tube, with just a few years left to live, he said.
“I tasted that horrific feeling, so I vow that I don’t want to see other families go through what I had to,” he said. “So if I can make it easier with my experience and what I can bring to the table, I will. And I feel it is important that I am down here to fight for the people that can’t fight or don’t have a voice.”
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