The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
Moms Making a Difference
Happy Mother’s Day! We couldn’t go throughout the day without sneaking on the blog to celebrate our very own Super Mom, who was just featured in So Scottsdale Magazine’s May 2024 issue that had a special section about “Moms Making a Difference”. See it below or read it online here! Happy Mother’s Day, Mom! We…
Why We Need Newborn Screening for MLD
Now that the U.S. has an FDA approved treatment for Metachromatic Leukodystrophy (MLD), you’d think they would automatically add it to the nationwide Newborn Screening recommendations for all states in order to immediately begin saving lives, right? Wrong. Accomplishing this is also quite the process and one that requires the entire MLD community to share…
FDA Approves Gene Therapy Treatment for MLD
It’s been a while since I’ve posted to the blog, but not for lack of updates…lack of time. While much has happened since my last post in November 2023 (Keira turned 4, I continued advocacy efforts for Right to Try 2.0, which you can read in the Wall Street Journal, USA Today and The Epoch…
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.