What is the SACHDNC? And why BabyFoodSteps is off to Alexandria VA!

S-A-C-H-D-N-C

that is an acronym that is more than a mouthful! It stands for:

Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

(which is a mouthful also!) So what is it and why am I writing about it today?

This is a federal advisory committee which was formed and chartered in 2003 to

 advise the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders.

This 10 member panel of doctors, public health officials and designated federal official hold advisory meetings a few times a year.

On May 17-18,2012 the 27th meeting of SACHDNC will be held in Alexandria Virginia… and Babyfoodsteps is thrilled to be going to experience this meeting first hand as part of a grant for www.BabysFirstTest.org Consumer Task Force. At this meeting we will be participating along with other task force members, as part of the “Public Comment” section of the meeting. This is an opportunity for community organization, groups, and even individuals to voice their opinions, comments and suggestions to the Advisory Committee. If you have  comment you would like to make about newborn screening you can make that in-person or submit a written comment per these instructions here. I encourage you to submitt a comment if you have any questions, compliments or suggestions for improvements realated to newborn screening or heritable disorders in children, and LET YOUR VOICE BE HEARD. Change does not come from sitting on the sidelines and cheering (or complaining about the coaching!)… BE the CHANGE you want to SEE!

Here are a few examples of Parent submitted Public comments from the FIRST meeting of SACHDNC in 2004:

Jill Fisch Comment

Micki Gartzke Comment

Terri Broadstreet Comment

As I read all these comments, I can feel each of these mother’s pain, frustration and passion as they voice their concerns in hopes that another child does not have to suffer through what they have witnessed their child suffer through.  I can feel all this because I share their pain, frustration and passion, walking the journey we have with mitochondrial disease diagnosis with our daughter, Lady A.   In a week, I will head to the SACHDNC in hopes of learning more about how I can help advocate and educate for newborn screening, with a passion and a hope that other parents will be able to walk a much smoother path with their little ones, in the future, one BABY STEP at a time.