Maryland Governor Proposes $2M for Rare Disease Testing

Funding would allow earlier diagnosis and treatment of metachromatic leukodystrophy (MLD)

Mar. 31, 2026 at 12:55am

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The governor of Maryland has proposed adding $2 million to the state's supplemental budget to fund earlier testing for the rare genetic disorder metachromatic leukodystrophy (MLD). This move comes after advocacy by the family of 3-year-old Carmen Akras, who suffers from MLD, which causes progressive deterioration of mental and motor functions. While Maryland previously planned to begin MLD testing in the near future, the new funding would accelerate the timeline, allowing the state to join Illinois, Pennsylvania, and New York in offering this critical screening.

Why it matters

Early diagnosis of MLD is crucial, as treatment is most effective when symptoms are caught early. The proposed funding would save lives by enabling earlier intervention for children born with this rare and devastating disease.

The details

Maryland currently does not test newborns for MLD, but there were plans to begin offering the blood test in the near future. After Carmen Akras's family testified before the state legislature, the governor's office added approximately $2 million to the supplemental budget to get MLD testing started sooner, by October of this year. This will allow Maryland to join a handful of other states that already screen for the disease.

  • Last month, WBAL-TV 11 News introduced viewers to 3-year-old Carmen Akras, who suffers from MLD.
  • Carmen's father, Tom Akras, and others testified before the Maryland General Assembly to start MLD testing sooner.
  • The governor's office added the $2 million in funding to the supplemental budget over the weekend.
  • If the measure passes, MLD testing will begin in Maryland by October 2026.

The players

Carmen Akras

A 3-year-old Maryland resident who suffers from the rare genetic disorder metachromatic leukodystrophy (MLD).

Tom Akras

The father of Carmen Akras, who testified before the Maryland General Assembly to advocate for earlier MLD testing in the state.

Maryland Governor

The governor of Maryland who proposed adding $2 million to the state's supplemental budget to fund earlier MLD testing.

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What they’re saying

“It's bittersweet because although we do have this testing now, by October of this year, that should come online. It's still too late for Carmen, but part of Carmen's legacy here is that her enduring legacy will be that starting this year — as opposed to 18 months from now and as opposed to 24 months from now — testing will begin here in Maryland, and children will be saved, and families will be saved from the awful consequences of this disease.”

— Tom Akras, Father of Carmen Akras

What’s next

If the $2 million in funding is approved by the Maryland legislature, the state will begin MLD testing for newborns in October 2026.

The takeaway

This case highlights the critical importance of early detection and treatment for rare genetic disorders like MLD. The proposed funding will save lives by allowing Maryland to implement newborn screening for MLD, joining a small number of other states that already offer this life-saving test.