MLD Newborn Screening – We need your blood & urine!

The MLD Foundation is collaborating with researchers at the University of Washington who are working on developing a newborn screen for MLD that would hopefully address the problems encountered with traditional screening approaches caused by the MLD pseudo-deficiency.

For their work they need samples of blood and urine from 15 affected MLD individuals. All samples would be anonymous/de-identified to the researchers.

Criteria for participating is:

  • A confirmed diagnosis of MLD (No age restriction)
  • No treatment (no transplant)
  • Living within the US (due to need for quick return once samples are drawn)
  • Willingness to prick the skin to obtain blood
  • Willingness to follow instructions to obtain samples
  • Agree to mail samples within 24 hours of obtaining them
  • Agree to release the MLD Foundation and the University of Washington from any liability

If you would like to participate, please send an email to

We will respond with the release and send you the packet to obtain the samples.

We hope to have the sample collections completed in the next two weeks.

Thank you for considering to help develop a Newborn screen for MLD.