On the heels of Mother’s Day weekend and National Women’s Health Week, we celebrate strong moms everywhere – from members of the Baebies team (pictured above) to parents around the world who are advocating for the health of their children.
In the News: Moms in Support of Newborn Screening
The topic of newborn screening has recently been featured in news stories across the country thanks to strong moms (and dads!). Patient families are passionately and tirelessly making their voices heard to support the addition of more diseases to state newborn screening panels.
Kari Jacobsen is mother to 4-year-old Georgia who was identified with Infantile Onset Pompe disease following screening in Missouri. Watch her story here.
Kari has been influential and inspiring in her pursuit to encourage the adoption of newborn screening for Pompe disease across the country. Her family moved to North Carolina to be closer to Dr. Priya Kishnani and her team at Duke University Medical Center. Kari was recently featured in this local news story: NC’s newborn screening fees triple amid test delays’ via WRAL
Additionally, the Johnson family lives in Missouri. All three children have Pompe disease. The Johnsons were featured in a news story out of Kansas City, right on the border of Missouri and Kansas: Kansas looking into testing newborns for Pompe disease’ via KMBC
The lead reporter on this story Donna Pittman is a Pompe mom herself. Her son Gabriel screened positive for Pompe disease through newborn screening in 2016. Learn more at Gabriel’s Gale.
Our last blog post featured an interview with Tracey Rose, the mother of Maggie Rose, whom was diagnosed with MPS I in the summer of 2018. Read her interview and learn more about Maggie below.
Way to go, moms! Your voices are powerful. Contact us to share your story and learn more about ways to support the expansion of newborn screening in your state.