Senator Blunt Discusses Mitchell Syndrome

Mitchell Syndrome was first identified by the researchers at the Undiagnosed Diseases Network (UDN) site at Baylor College in Houston. Mitchell Herndon—the first identified patient with this rare neurological disease—had been referred to them by doctors at Washington University, another UDN site.

The UDN was founded in 2014 and has 12 research and diagnostic sites throughout the country. Researchers at these sites use information-sharing and genetic sequencing to diagnose mysterious illnesses, in the hopes of identifying treatments and cures. Thousands of patients have been helped.

Unfortunately, the UDN’s funding has recently been eliminated by the latest budget proposed by the National Institutes of Health. This past Tuesday, May 17th, Senator Roy Blunt of Missouri brought the matter up in a sub-committee Appropriations Hearing. Senator Blunt has been a supporter of the UDN and was even instrumental in establishing a UDN site at Washington University in St. Louis.

In his comments, the Senator described one young man who received a diagnosis at the UDN. That young man was, of course, our own Mitchell Herndon. Michele had previously reached out to Senator Blunt’s office to share Mitchell’s story, in case they needed an example of the good work being done at the UDN. In his comments, the Senator acknowledges the UDN’s work in diagnosing Mitchell, but is admittedly unaware of the additional Mitchell Syndrome patients that have been identified. They also owe their diagnosis to the UDN.

For a while, the Network has anticipated that their funding might come to an end. Leaders have thus been busy identifying non-government sources of funding to carry on the work. But to Senator Blunt’s request, NIH Acting Director Dr. Lawrence Tabak promised to work with the committee to come up with a different plan so that families battling mysterious illnesses might get the help they need. We hope they stand by that promise.

Mitchell always wanted to go into politics. He wanted to make a difference. Even in death, he is making a big one.

-Matt Herndon (5/20/22)