After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as early as possible. Inspired by many others in the SMA community, we decided to pay a visit to our state senator’s office in Annapolis during SMA Awareness Month to ask him to look into adding SMA to newborn screening panels in Maryland.
After the appointment, we wrote (on Max’s FB page):
“We were delighted to meet today with Ms. Ruthie Herman (Chief of Staff for Senator Roger Manno), who is not only a legislative virtuosa but also an empathetic listener and surprisingly adept at learning to understand Max’s unique vocalizations. The two of them carried on a great conversation about common interests. … At the conclusion of our meeting, Max sagely offered the following observation (via his eyegaze-controlled AAC device) about any potential legislation: ‘It has to work.'”
Several months after we visited with Sen. Manno’s chief of staff Ruthie, we learned that in the last five years the Maryland legislature had changed how diseases get added to the state’s newborn screening panels: instead of being made via direct legislation, decision-making authority was now delegated to a panel of experts. Thanks to the coordination of Cure SMA staff, we were able to participate with other Maryland SMA families in coordinating testimonies to the panel as they considered submitting their recommendation to the Maryland Secretary of Health, and in November of 2017, the committee chair sent a letter of recommendation that SMA be added to newborn screening panels in the state. As of now, the recommendation is waiting for Governor Hogan’s signature.
Our day in the state capital was a valuable opportunity to forge connections with our governmental representatives, raise awareness about SMA, and “put a face to the issue” of SMA for our legislators. The experience definitely left us wanting more…to find more ways to advocate for our SMA community at the national, state, and local level.
-Jonathan, Kristen and Max Lasko
Thank you the Lasko family for sharing their advocacy story with us for Newborn Screening Awareness Month!
To highlight the advocacy of the SMA community during Newborn Screening Awareness Month, we will be sharing more stories like the Laskos throughout September. Interested in sharing your advocacy story? Email us at [email protected]!
Be sure to check out our news section later this week for an overview of what our community has accomplished in newborn screening and Cure SMA’s strategy for implementing SMA newborn screening in every state.