The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
3 Years of Keira
Wow. It has been a minute (or more like 6 months or so) since I’ve actually posted an update here. Life, travel, advocacy, parenting, work, holidays and everything in between has taken up our time and if there’s one thing I know: time with our girls over anything else is time not wasted. Now that…
Advocacy in Atlanta and London
This month has been a whirlwind of travel – first to Atlanta to speak about Right to Try 2.0 at the State Policy Network’s 30th Annual Conference and then to London to speak about the gene therapy Keira received, how it has transformed her life and how we are helping other families like ours. Next?…
PFDD for MLD on Oct 21st
These letters may not mean much to you but they mean SO much to the MLD community of patients and their loved ones. Because on October 21st, a select group of individuals in that community (including yours truly), get to share their stories in a PFDD, meaning Patient Focused Drug-Development meeting, with the FDA, researchers,…
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 