Cure MLD by supporting MLD Foundation …

… as we work with researchers & biopharma, get MLD on federal and state newborn screening panels, move towards FDA gene therapy approval in early 2024, and continue to support families affected by Metachromatic Leukodystrophy. Every donation counts!

Let’s all come together on Giving Tuesday!  
MLD Foundation needs you to help us continue our mission. Please Donate Now!

There is so much to do in 2024 … gene therapy should be approved by the FDA in Q1 so we must have newborn screening in place to identify & refer babies when the therapy is effective, and we need access & reimbursement ready to get families to the therapy as it will only be available in a few locations in the US. Your donation will help ensure the work continues to move MLD newborn screening into every state, is accessible to every baby in need, and paid for even across state lines. 

MLD Foundation is actively working to make this possible. The foundation was an expert reviewer for the 2023 ICER value based assessment that determined MLD gene therapy was effective and makes financial sense. We are actively advancing Medicaid policy to get infants access to therapy across state lines, and moving creative value-based payment agreement legislation forward to get the multi-million dollar therapy paid for, … and so much more.

Of course, our primary focus is always on the MLD Family™ … compassion and support for MLD families who can – and those who can’t – access therapies. Quality of life always matters! 

We continue to work with several other pharma companies on next generation therapies that might have expanded inclusion opportunities and increased effectiveness for others in the MLD community.

All of your tax-deductible* donation goes 100% to our programs  – we are all volunteers – no salaries are paid at MLD Foundation

None of this would be possible without your support! Thank You from the bottom of our hearts!

*  US tax deduction – consult with your tax advisor if you have special tax circumstances.I