While some may see Ellie’s future as bleak, her family and friends are full of hope. Currently, Ellie is given a mix of antioxidants and vitamins – but there are no definitive long-term therapies.

Ali Fatemi, Director of the Moser Center for Leukodystrohpies at the Kennedy Krieger Institute in Baltimore, Maryland has launched a research project that will provide a road map towards nanotherapy for LBSL. The outcomes of the research will become a very powerful tool for testing new effective medications.

There are four milestones within the project that require funding. The research within each of the milestones will take place over the next several years. Year one of “Milestone 1” required $60,000, which was met in October 2015 and allowed the project to begin. The second phase of “Milestone 1” requires $231,000 and funds raised to date have allowed our researchers to continue with increasingly important studies and testing over the past 18 months to position us for “Milestone 2”, which will require just over $1,000,000. We are excited and encouraged by the progress that has been made and know this will be a “marathon” effort – not a sprint. With your help, together we can save Ellie and the children like her across the globe – to help them walk and keep them strong for years to come.

October 2018:
Moser Center for Leukodystrophies LBSL Research Update for Patients and Families