Babaamaajimowinan (Telling of news in different places)

News conference to announce start of newborn screening for spinal muscular atrophy (SMA)

Minnesota among first states to begin universal screening for leading genetic cause of early childhood death in U.S., affecting 1 in 6,000 live births each year

Event

Minnesota Department of Health, newborn screening partners, families will hold news conference announcing the start of newborn screening for spinal muscular atrophy in Minnesota.

Date/Time/Location

Monday, March 5, 11 a.m. to Noon, Gillette Children’s Specialty Healthcare, 200 University Ave. E., St. Paul, MN, 55101. Park in the WEST Parking Ramp. There will be parking validation for media guests. Take elevators to 4D and exit on the opposite door (there are two doors, one goes to the hospital and the other goes to the parking ramp). There will be signs once you exit the elevator, but we will be meeting straight down the hall from the elevators.

Background

The Minnesota Department of Health has begun processing samples from newborn babies in the state for an inheritable disease that, if left untreated, causes children to develop progressive muscle weakness, loss of motor skills, loss of ability to swallow and breathe, and death. A recently approved drug can effectively modify the course of the disease. Early identification through newborn screening allows early treatment to produce better outcomes. The event is being held at Gillette Children’s because the facility is one of three specialty centers in Minnesota currently treating for SMA.

Speakers

• Minnesota Health Commissioner Jan Malcolm

• Dr. Randall Richardson, pediatric neurologist, Gillette Children’s Specialty Healthcare

• Carissa Kiester, mother of a child who died from SMA and advocate for screening in MN

• NOTE: Other families with children with SMA will be in attendance at the event. At least one other treating provider will be present as well.

 

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