Mld Foundation

Metachromatic Leukodystropy…two words we had never heard of let alone pronouce. These words would change our world forever. When three of our two girls were diagnosed with this rare, terminal neuro-metabolic disease, abbreviated MLD, there was no where to turn, no one who understood. Connecting with another mother who had two girls with the disease meant everything to me and became the basis for forming the MLD Foundation. Today we are there for other families on the MLD journey…providing support, encouragement, education and community…a "special MLD Family™". We promote awareness about MLD. Imagine if you were told that your 1 year old would lose all their aquired abilities and would die before the age of 5 years! A reality for those who have the late-infantile form of the disease. 

We are hard at work influencing research and networking with researchers to develop a treatment for MLD. We want to make it a reality that no child has to suffer the affects of MLD. We are actively working with researchers to develop a newborn screening assay to screen chldren at birth for MLD. There are many challenges with MLD. The enzyme that is lacking needs to cross the blood/brain barrier. Not an easy task to accomplish. One in seven in the population carries a psuedo-defiency that while meanless to the person, would give too many false postives if not taken into consideration when developing a newborn screen. We are passionate these challenges can be overcome but we need you to C.A.R.E. along with us.

MLD is one of 7,000 rare diseases. Many of our issues are shared with others in the Rare Community. We are actively educating Congress and advocating for laws and funding to help not only MLD families but all of the 30 million Americans, 50% of whom are children who will die by age 5 years, who are affected with a rare disease. 

One in Hundred people carry the mutation that causes MLD. Do you? None of us knew we did. Statistics say, we had a 50% chance of having a child who was only a carrier like us, 25% chance of having a child free of the disease, and a 25% chance of having an affected child. We had one free of the disease and two affected.

A Rare Disease could strike you! Please C.A.R.E. about those affected with MLD, Metachromatic Luekodystrophy, and other rare diseases. You do make a difference! It so hard to watch your child lose life before your eyes. We had an MLD angel only 3 short months after hearing about the MLD diagnosis. Our other daughter is progressing slower than expected but is still losing ablitlies. She has gone from being an smart, active child to being in a wheelchair unable to talk, move, or care for herself. She has the slower juvenile form of MLD. There is also an adult form that can strike a person in their 20's, 30's, 40's and up. To learn more go to http://MLDfoundation.org