In May of this year, we had the incredible opportunity to go to Washington D.C. with other MLD families, doctors, scientists and supporters to share our stories, and why Newborn Screening is necessary for MLD.

Time got away from me so I’m just now posting about it…one week before we return to D.C. (more on that later).

During our initial trip, where I took Keira and Eva and Dave stayed home with Livvy, we met with several lawmakers (and their teams) and I was among a few parents who spoke at a Congressional Briefing on the Hill. Not something I had on my bingo card for 2025…or ever, for that matter!

It was an amazing experience but also very eye opening to see in-person the inner workings of our government and the processes by which things get done (or sometimes don’t). Not unlike having to be an advocate for your children at the hospital, it is up to us at citizens to be an advocate for things we know are important to this nation – and in this case, are life-saving.

Following the ACHDNC being shuttered by the Trump administration – a mere one week prior to the vote on adding MLD to the RUSP – the entire MLD community was up in arms and determined to somehow move the vote forward.

So we, along with other MLD families across the nation, went to Capitol Hill to show lawmakers what newborn screening for MLD can do; to show them, in person, the lives that have already been saved.

During the trip, we met with Rep. Greg Stanton, along with staffers from the offices of Senator Mark Kelly, Senator Ruben Gallego and Rep. Buddy Carter from Georgia.

I also spoke alongside three other parents at a Congressional Briefing at the Capitol Hill Visitor Center, where a variety of lawmakers listened to our stories of tragedy and how they have the power to turn this into a triumph for the many families who will also be faced with this devastating diagnosis.

Below are a few photos from our trip. Keira and I are looking forward to going back to DC next week! Feel free to follow along on that journey on my Instagram, @mrskendrariley.