The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
Secretary Kennedy Adds MLD to Nationwide Newborn Screening
It took me a moment to come down from the momentum, adrenaline, shock, relief, celebration and joy that came from the last month of 2025. The hopes/wishes I expressed in my last post turned into a reality. On Tuesday, December 16, 2025, Secretary Robert F. Kennedy Jr. added both MLD (Metachromatic Leukodystrophy) and DMD (Duchenne…
Congressional Briefing #2
While our trip to D.C. in May was both successful and hopeful in sharing our family’s story with lawmakers, truly moving the needle seemed to warrant another trip and another Congressional Briefing. This past week, Keira and I returned to the Capital, where we were included in a panel discussion about our family’s experience and…
Recap of MLD on the Hill
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…
CureMLD.com
CureMLD.com’s Founder Maria Kefalas helped the Riley family to learn about the option of gene therapy. Head to their site to read more about this extremely rare disease and resources available for families.
MLD Foundation
The MLD Foundation is the longest running resource for families affected by MLD.
Visit their site to learn about the disease, clinical trials available and meet other MLD families.
The Riley's Road to Italy 