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Archive for July, 2012

Saving Babies “One Foot at a Time”

Sunday, July 29th, 2012

SaveBabiesBy Ashley Poling

Henry David Thoreau once said, “Every child begins the world again.”  While certainly a concise quote, it got me thinking about the meaning behind Thoreau’s words.  Perhaps, one of the most amazing things about children is their propensity for optimism—their enthusiasm and wonder over the small things in life, as well as their ability to capture the kindness of the human spirit through simple words or gestures.  But what if a child never had the opportunity to experience any of this?  Or what if the quality of this experience was diminished? Newborn screening is an issue that I knew little about a few weeks ago, and it is one that greatly affects a child’s quality of life.  After having the privilege of speaking with Jill Levy-Fisch, President of Save Babies Through Screening Foundation, I realized how important this issue is to the health of the more than four million babies born in the United States each year.  Save Babies is the only national nonprofit organization that focuses solely on advocacy for newborn screening.  Because Friends Unite is dedicated to the improvement of education and health around the world, we are incredibly interested in the work that Save Babies champions.

By a simple prick of a baby’s heel within two days after his or her birth, a wealth of information can be discovered which can, quite literally, alter the course of that baby’s life.  After the blood from the newborn screen is analyzed, it is determined whether or not that baby has the potential to develop a number of different harmful conditions, such as metabolic disorders, hormonal issues, blood disorders, etc.  If one of these conditions is detected through the newborn screen, it should be followed by additional tests, which will determine affirmatively whether or not a baby has a particular condition.  If this is the case, parents have the opportunity to work with health professionals to treat the condition.  With some of the disorders detected, it is even possible to regulate a child’s diet carefully as he or she develops in order to treat the condition preventatively.

After watching a very compelling Save Babies video through the nonprofit’s website, one story about a little girl named Cassidy truly tugged at my heartstrings.  Cassidy was diagnosed with glutaric acidemia, type 1, or GA-1, at the age of 17-months.  At the time of Cassidy’s birth, the test for this condition was not yet a part of newborn screening in Cassidy’s state, which ultimately hid her illness from her parents until she was over a year old.  Because Cassidy’s parents did not know that their daughter had this condition at birth, they did not realize that Cassidy needed to be on a low protein diet.  It took toxins building up in Cassidy’s body from a protein overload, and an ultimate complete collapse of her bodily system, in order for her to finally be diagnosed with GA-1.  Unfortunately, the brain damage caused by Cassidy’s system collapse was irreparable, leaving her unable to walk or talk at the mere age of 17-months.  What a difference it would have made to Cassidy’s life had this test for GA-1 been available in her state when she was born—her whole life could have turned out differently had there only been the capacity in her state to find out at an earlier time whether or not she was carrying this rare disease.

While all fifty states now require at least some form of newborn screening, there are degrees of variation in terms of the number of conditions that are screened in each individual state.  While some states screen for 50+ conditions, others screen for 40-49, while still others only screen for 39 and under.  In those states that do not test for 50+ conditions, it is still possible for parents to pay for any additional tests that they would like performed. One of Save Babies’ missions is to promote consistency among all of the states in newborn screening so that newborns are not only screened comprehensively, but so all residents of the fifty states have equal access to newborn screening tests.  Education is another key component of Save Babies’ mission, and in addition to increasing awareness of disorders that can be discovered through newborn screening and encouraging communication between newborn screening advocacy groups, this organization also promotes the education of parents and healthcare professionals about these conditions.

I was fascinated when Jill told me that Save Babies is also reaching out to people in other countries who do not have access to newborn screening.  Save Babies sends out kits to perform these blood tests–free of charge–when contacted by parents who need their help to effectively screen their newborn.  Jill relayed that Save Babies also helps to assure that these parents have a place to send these completed newborn tests so that they can be analyzed properly for any potential conditions that may appear.  Save Babies is also working to translate the compelling video I mentioned earlier into a host of other languages—it is currently available in English, Spanish, and traditional and simplified Mandarin.  Save Babies has started a project called “1 Billion Happy Baby Stories Mosaic,” where people can share any positive experiences they have had involving newborn screening, or with babies in general.  These stories will be posted on through Save Babies at a cost of $1 per story.  These donations will help support the foundation’s continuation of their admirable and essential work towards helping babies lead healthier lives worldwide by helping to start screening programs in other countries.

Every child does begin the world again, and each child has the potential to make some remarkable differences in humankind.  Doesn’t every child deserve a healthy start?  I know that Save Babies is truly making a difference in giving children the chance they need to lead happy, healthy lives, and I know they are doing so “one foot at a time.”

If you would like to find out more about newborn screening in your state, please visit Save Babies Through Screening Foundation’s website.

The Impact of Introductions

Sunday, July 29th, 2012

By Ashley Poling

PT_Introductions Picture_Group of Professionals.jpg

My name is Ashley Poling, and I am a third-year law student at Elon University School of Law in Greensboro, North Carolina.  After studying public international, humanitarian, and human rights law in Geneva, Switzerland and Strasbourg, France during the summer of 2011, I realized how much I wanted to pursue international law as a career.  I am very interested in working with nonprofit organizations that focus on advocacy issues that directly help people in need around the world.

When Murali Bashyam, President of Friends Unite, reached out to me this past spring to work on this new human rights and advocacy section, I was excited to get involved with such a wonderful organization.  How did Murali know I would be interested in this kind of work, you might ask?  When I tell you the connections that brought us to this point, you will be able to see just how truly amazing a simple introduction can be.

My mother, Lindy Poling, a retired teacher of 35-years, taught Murali as a high school student in the 1980s; but this re-connection was only made after Murali met my father, Barclay Poling, nearly 20 years later. Murali and my Dad met through their volunteer work for Southern Sudan Fellowship, a nonprofit organization in Raleigh, North Carolina.  Knowing that I had some interest in international law, my Dad suggested that Murali might be a good person for me to meet.  After meeting for coffee and expressing my growing interest in human rights law, I was intrigued by Murali’s career as both an Immigration lawyer and as the founder of a nonprofit organization.  When Murali contacted me this past spring in regards to getting involved with Friends Unite, we both concluded that I might be able to help with developing this new section for the organization.

After beginning work on this new human rights and advocacy blogging section for Friends Unite, the connections only continued to grow.  I had the privilege of brainstorming with Murali and Pam Prather, Vice-President of Friends Unite, in early June regarding this blogging section.  My first blog, which explores the issue of newborn screening, ultimately resulted from a connection through Maria Corena-McLeod of the nonprofit WSAID (World Solutions Against Infectious Diseases), a nonprofit partner of Friends Unite.  After Murali put me in touch with Maria, she was kind enough to connect me with Jill Levy-Fisch, President of Save Babies Through Screening Foundation, which inspired my first blog for Friends Unite.

It is truly amazing when you think how these little connections ultimately culminated in a project that I believe will truly make a difference in the world of advocacy.  If we can expose people to issues that they might never have known about before visiting the Friends Unite website through this blog, we are that much closer to inspiring action that will ultimately result in positive change.  I am thrilled to be working on such a project, and I strongly believe that everyone comes into your life for a reason.  I will look forward to increasing the wonderful connections of Friends Unite through this incredible opportunity, and I thank you for taking the time to read.