We believe in the power of community and the importance of building relationships with families going through similar experiences. If you are an individual living with a neuromuscular disease, we invite you and your loved ones to attend our MDA Engage Newborn Screening Webinar. It will broadcast live online on Friday, Aug. 30, from 11 a.m. to 12:30 p.m. CT/noon to 1:30 p.m. ET.
Newborn screening is a nationwide public health program that, through testing a small blood sample via a prick to the heel, detects genetic conditions for which treatment is available.
“Newborn screening is the key to delivering timely treatments and care to babies born with conditions like SMA and Pompe,” says Brittany Johnson Hernandez, MDA’s senior director of Policy and Advocacy. “MDA is committed to advancing newborn screening across the country for these and other neuromuscular conditions so that every baby born with these diseases can get the care they need when they need it.”
Topics discussed during this session will include an introduction to what newborn screening is and how it began, why families should be engaged with newborn screening, and what families can do to support newborn screening initiatives. Viewers will hear a physician’s perspective on diagnosing and treating patients through newborn screening. Questions can be submitted through an online chat feature. Webinar speakers include:
- Dr. Rodney Howell, chairman of MDA’s Board of Directors and professor of Pediatrics and chair emeritus of the Department of Pediatrics at the Miller School of Medicine at the University of Miami
- Dr. Priya Sunil Kishnani, MBBS, professor of Pediatrics and chief of the Division of Medical Genetics at Duke University School of Medicine
- Brittany Johnson Hernandez, senior director of Policy and Advocacy at MDA
Click here to register, and join the webinar on Aug. 30.
This webinar is brought to MDA families in partnership with Amicus Therapeutics and Sanofi-Genzyme.