I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I know that not everyone has the same experience. This September, as we celebrate 60 years of newborn screening in the US, I’m reflecting on the many perspectives of newborn screening: joy, pain, and hope. We have come a long way, but we still have much work to do. Join me in raising awareness for newborn screening and ensuring that every baby has the opportunity to thrive.
This is part of a new, on-going series I'm r...
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I know that not everyone has the same experience. This September, as we celebrate 60 years of newborn screening in the US, I’m reflecting on the many perspectives of newborn screening: joy, pain, and hope. We have come a long way, but we still have much work to do. Join me in raising awareness for newborn screening and ensuring that every baby has the opportunity to thrive.
This is part of a new, on-going series I'm releasing for this podcast called Kevin's Journal. It will be a while before I release another full season of longer episodes, but until then I'm going to keep releasing new content here—brief reflections on life and mental health from a rare disease perspective.
In this episode I mention a few organizations and resources that I'd like to share here:
PKU Journal
This episode first appeared on my blog. You can read that article here: https://pkujournal.com/60-years-of-newborn-screening/.
International Society of Neonatal Screening
I'm honored to be a member of this organization whose stated purpose is "to advance screening for neonatal and infant sicknesses and disorders, worldwide."
Their website: https://www.isns-neoscreening.org/.
Association of Public Health Laboratories (APHL)
I've partnered with APHL from the beginning of my newborn screening advocacy journey. You can learn more about them here: www.aphl.org.
In 2013 I produced a video for them called The Story of Newborn Screening, which is available on my website: https://pkujournal.com/the-story-of-newborn-screening/
Babys First Test
For more detailed information about newborn screening, including what is offered in your state, visit Baby's First Test: https://www.babysfirsttest.org/.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com
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