Remembering Aaron 2022
8 year old Aaron lost his battle to MLD, but his mom, Tamra, shares she is "Overjoyed because he he is finally healed, running with Jesus and eating all the spam musubis and chocolate he can in heaven." and that she is "Broken-hearted because he is already missed so much."
Tamra is a dear friend of MLD Foundation and has traveled as far as Washington DC with us to lobby for MLD and other rare disease issues.
MLD Foundation continues to advance MLD newborn screening so children with MLD are identified before symptoms when they are eligible for life changing therapies like the gene therapy that is working its way though the FDA for review, and hopefully, approval. We remain active in policy to assure reimbursement are ready when the therapy is approved.