Newborn Screening Awareness Month: Working Together to Increase Awareness

Newborn Screening Awareness Month: Working Together to Increase Awareness

Public Square #02Published August 19, 2016
The Prompt: 

September is Newborn Screening Awareness Month, and Baby’s First Test, along with organizations, states, providers, and families across the nation, celebrate the month by helping raise awareness about newborn screening. This is typically done by social media campaigns, creation of new educational materials, hosting events, and sharing stories and experiences with newborn screening.

In 2013, the United States celebrated 50 years of newborn screening and to commemorate this special occasion, the “Be Bold Wear GOLD” campaign launched during Newborn Screening Awareness Month. Throughout the month, the newborn screening community rallied together around the principle that all babies deserve a healthy start. With “Be Bold Wear GOLD” as one example of an awareness campaign, we would like to hear about your education and awareness efforts during Newborn Screening Awareness Month. Whether you’re a parent, work for a state, organization or hospital, or if you’re simply interested in newborn screening, join us in sharing your plans for September, how you will define success, and add your ideas on how we work together to maximize our awareness efforts for the month.

Comments will be closed October 1, 2016.

9 comments
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The Question: 
How can we maximize efforts during Newborn Screening Awareness Month and increase awareness about newborn screening?
The Question: 
How can we maximize efforts during Newborn Screening Awareness Month and increase awareness about newborn screening?
Jaclyn Seisman, MPH's picture
ModeratorAugust 24, 2016
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Jaclyn Seisman, MPH Program Manager, Expecting Health at Genetic Alliance
Welcome to our first public square! Join us in sharing your plans for Newborn Screening Awareness Month, and let us know how you will define success. Sound off below!
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Pat Blake Strategic Communications Director at State Hygienic Laboratory at The University of Iowa
We're thinking about doing a "Thunderclap," but have never done so before. Any ideas? Suggestions? Warnings? Thanks.
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Amy Gaviglio
Hi Pat! Thunderclap sounds super interesting - I'm not too familiar with this platform, but it seems pretty cool! Are you going to try it with the free version or do you have a Lightning or Storm account? I'd love to see something focused more on physicians this year - is anyone familiar with the site SERMO?
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Jaclyn Seisman, MPH Program Manager, Expecting Health at Genetic Alliance
I love the idea of a Thunderclap! I am less familiar with the tool, so I would love to hear about your process and your campaign's results! Is there a way for the NBS community to help with your Thunderclap, Pat? I also think targeting physicians during September is a great idea. Has anyone here tried SERMO?
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Aaron Goldenberg Associate Professor at Case Western Reserve University
Welcome to the the NBS Public Square! I am the Director of Ethics, Policy, and Practice for Babies First Test, and will be one of the moderators for the Public Square. I can't wait to hear more about your plans for NBS Awareness Month and to future engaging discussions about new and important issues related to Newborn Screening! Please also remember, we want to hear from you! If you have ideas for future discussions, let us know!
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Jenna Kampfschulte
Hello, Kurt and I have a child with Adrenoleukodystrophy (ALD) which is not currently on the TX newborn screening panel - although it was just recently approved. We now need to push the state to budget for implementation of this. ALD is a genetic disease affecting the brains of boys 5 - 10 years old and there is no cure. You can, however, halt it with a bone marrow transplant or gene therapy - if you know to look for it. There are many rare diseases on the panel that have no potential positive outcome - and ALD does. New York has just instituted it and they have identified 6 boys already. These boys will now be monitored and have a chance to live if they can get through the bone marrow transplant process (which admittedly does have it's own fatality risks). Our efforts are very local - we've had a small segment on NBC5 here in Dallas and we have a large fundraiser coming up on the 24th.
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Amy Gaviglio
Hi Jenna, Thank you so much for sharing your story. Certainly, TX is not alone in trying to figure out how to add ALD and the other two conditions recently added (Pompe and MPS1) to their newborn screening panels. Many states are in the same boat (I'm sure that is not very comforting to you, however!). I am really happy to see that you are looking at how to increase funding for TX as this is often a part of adding a disorder that is overlooked. Adding a test takes a lot of money and time and it extends way past just purchasing the testing equipment and hiring staff and goes into making sure a follow-up system is in place so the experience for families is as smooth as possible. No state wants to add a condition before it is ready and before the system is in place to support screening and the family throughout the process. I encourage you to work with the TX program to learn what they need to add the disorder, so you can work together to make it happen in the best way possible!
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Amy Gaviglio
I just stumbled across the site called The Mighty after reading a wonderful article about rare disease. They offer free partnerships and have an amazing reach - perhaps this is something the newborn screening community (led by Genetic Alliance) could help do? https://themighty.com/how-we-can-help/ Is anyone else familiar with this site?
Jaclyn Seisman, MPH's picture
ModeratorOctober 25, 2016
FLAG
Jaclyn Seisman, MPH Program Manager, Expecting Health at Genetic Alliance

Amy - I love your idea of working with The Mighty. Our team is looking into it!

Also, thank you to everyone who participated in our first public square! We loved your ideas on how we can work together to increase awareness for newborn screening, and we can't wait to see how these ideas will be incorporated in the upcoming months.

If you have questions or ideas for future public squares, please email info@babysfirsttest.org.

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