Just over a year ago, I received an exciting email notifying me that I was selected to be part of the Baby’s First Test Consumer Task Force for 2012. What an amazing year it has been… Here is a recap of my year on the Task Force and my awareness project that I completed as part of it!
I learned so much in the first few months on the task force with the webinars and guest speakers who brought us up to speed on all the aspects of newborn screening from helping us become familiar with all the acronyms and governmental and state agency involvement to the nuts and bolts of what it takes to run a NBS program, the Baby’s First Test team made sure it was all covered. Learning about all of these different aspects led me to write my first blog post in March called “What is Newborn Screening?” in an attempt to begin to share what I was learning with my blog readers and my friends and family, through Facebook.
In May, I had the amazing opportunity to travel to Washington, D.C. to attend and help present a public comment to the Secretary’s Advisory Council on Heritable Disorders in Newborn and Children (SACHDNC). At this meeting, I got to meet in person the other members of the task force, the Baby’s First Test staff and so many influential people in the newborn screening community. It was an incredible experience and I posted this blog post, “What I Learned about Newborn Screening at SACHDNC” when I returned. Returning from that meeting, my wheels were spinning and my mind was full of ideas as we entered the awareness project portion of the grant and task force requirements. I set right to work beginning to “design” my awareness materials. After much googling, sketching, and brainstorming, I decided on a baby foot as my “theme” and cut out some “prototypes” from some scrapbook paper. What started as a simple concept- a baby foot with a Band-Aid to represent the heel prick that baby’s get as part of newborn screening… developed over the next few months into a full blown awareness project!
In June, my awareness project took me back to Washington,D.C. to attend a conference for the United Mitochondrial Disease Foundation. My daughter is suspected of having this disorder, and so I welcomed an opportunity to meet and to talk to other families going through a similar experience as we were. I passed out many feet on my travels and meetings and found quickly that not many families were aware that some types of mitochondrial diseases were being screened for in some states. After speaking with the UMDF about this, I was thrilled that they agreed to put some info on their website about Newborn Screening, for parents and caregivers.
As September arrived, I was all geared up for my big LAUNCH of my project virtually and in person. With September being Newborn Screening Awareness Month, I took to the web-o-sphere, as I launched my web campaign through my blog, called 10 Fingers 10 Toes, 10 Facts about Newborn Screening that you need to KNOW. With September also being Mitochondrial Disease Awareness week, I wrote about the connections between Mito And Newborn screening and about our family’s story. I ended the month with a weeklong series about newborn screening in Texas, called Texas Born: Newborn Screening in the Lone Star State. This series featured 6 family’s stories, from parents and children who were both saved and lost due to Newborn Screening in Texas. I topped the month off with a final post featuring a video that my son helped me put together highlighting the 10 fingers, 10 toes, and 10 facts!
In September, I also took to the streets with folders I had made up (with the baby feet!) for OBGYN’s and Pediatricians (and pregnant moms I met along the way) in my local suburb of Houston. These folders contained a bit about my family’s story and why I was so passionate about newborn screening. I also included the recommended uniform screening panel printout, some information on Mitochondrial disease, my contact info and my list of 10 fingers, 10 toes, 10 facts about Newborn screening every expecting parent (and doctor) should know!
So lets do the Math-
20 folders for OBGYN ad Pediatricians x 20 feet each= 400
10 folders for my consumer task force members x 10 feet each = 100
55 (or so) feet handed out at the UMDF conference and to pregnant moms I met along the way=55
400 + 100 + 55 = 555 feet!
It is my hope that everyone that receives a “baby foot” and information about newborn screening will share with at least 2 other people what they have learned.. then nearly 1,700 people will have life saving information, that they may not have known about before. And then if each of those 1,700 people tell 2 more people… well you get the idea! As my term on the Baby’s first Test Task force draw to a close, I wish my BABY FEET luck on their continued journey of hope, education and awareness!