Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA

At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly lethal genetic disease. And […]

Lullaby Blankies Helps End SMA!

In December I met Stephanie and Brandon Humes, owners of Lullaby Blankies. Stephanie reached out with an email about their story that goes something like this –> Gorgeous couple in love. Get married. Want to start a family. But Stephanie and Brandon’s story takes a turn there. Thanks to a proactive OB, Stephanie and Brandon […]

My 2 Cents On Study: Screening For Spinal Muscular Atrophy (SMA) Not Cost-Effective

The results of a study has apparently “concluded” that pre-screening for Spinal Muscular Atrophy (SMA) is not cost-effective and its “findings” were presented Friday at the annual meeting of the Society for Maternal-Fetal Medicine in Chicago. The study, based on its statistical assumptions, estimates 11,000 women would have to be screened to prevent one case […]

SMA Carrier Testing Made Affordable

Are you pregnant or thinking of expanding your family? We are pleased to have just learned about a special program offered by Athena Diagnostics that cuts the cost of the SMA carrier test, making it an affordable option for families. Because many insurance companies don’t cover the cost of this important test, Athena now offers […]

SMA Research Study Needs SMA Moms

I think carrier screening is crucial to increasing awareness of SMA and in both treating and preventing it. And with SMA carrier prevalence as high as 1 in every 40 people, it is high time that SMA joins Cystic Fibrosis as a routine option for potential parents. I know most families impacted by SMA feel […]

Important SMA carrier screening development

Deborah and Chris Heine lost their daughter Claire to SMA in November 2004. They started the Claire Altman Heine Foundation (CAHF) in memory of Claire and have dedicated themselves to developing a global SMA carrier screening program so that future prospective parents are made aware of SMA and could potentially avoid having to endure the […]