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Final Reflections

  • As I reflect on my year as a member of the Consumer Task Force, I realize how fortunate I have been, and how amazed I am by my fellow task force members.

    Fortunate, because I live in a time and place in which my son with CAH is able to thrive, newborn screening is available for many conditions, and our health system is able to evolve as people uncover new technologies and treatments to expand newborn screening programs.

    Amazed, because my fellow task force members bring vision and passion to improving our newborn screening system.  Clearly we can continue to improve, and evolve, and grow, our newborn screening programs; I saw how my colleagues used their own experiences, sometimes very painful, to push our policy-makers, doctors, hospitals to improve the health care system, and to screen more babies, for more conditions, and save more child lives.

    Of course, I was also fortunate to spend a year on the task force myself, under the able guidance of Elizabeth and Natasha, and do my small part to help move newborn screening forward.  Though our year on the task force is over, none of us is finished with our work.  I will continue to look for ways to increase awareness of and access to newborn screening in developing countries around the world; there are too many babies who face early death or lifelong disability for lack of a simple blood spot test and basic treatment.

    It takes individuals willing to share their pain, vision, and passion to show the need for progress, and to insist on it.  I saw so much of that from my fellow task force members, and the experience was both educational and inspirational.

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