The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
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?…
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,…
After testifying at the Arizona Senate and House of Representatives, sharing our family’s story and how the expansion of the original Right to Try Bill could help families like ours, I’m thrilled to share that Right to Try 2.0 has passed and was signed by Governor Doug Ducey! Right to Try 2.0 is a first-in-the-nation…
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.
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.