InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues

In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was able to keep the twins occupied for the most part, and spent about an hour speaking with me.

The original plan was one episode, but she notified me later that month that my interview would appear in a second episode because they realized they needed to include more content from everyone they interviewed.

Today, the second installment of their investigation of Newborn Screening in the United States was published, and this segment highlights the challenges NBS programs face in implementing conditions because of funding issues.

And, they spend time talking about Newborn Screening for Krabbe Disease.

“…for me, advocacy is how I continue to be her mom.”

Lesa Brackbill

You may also note that Pennsylvania did not report having NBS issues, and that is thanks to Tori’s Act 133 of 2020 ❤️

Here’s the second episode.

And here’s the first episode if you missed it.

I continue to be so grateful for the opportunities that have come my way to advocate for expanded Newborn Screening and to tell Tori’s story ❤️