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Cystic Fibrosis is not a disease that only impacts white people, but for years and years, it’s been treated that way. Now thanks to organizations like The National Organization of African Americans with Cystic fibrosis and their founders, Michele and Terry Wright telling the story of his late diagnosis (he was 54 years old), diagnosing people of color is slowly changing. Many people of color are not diagnosed at birth despite newborn screen because their rare genetic mutation may not be one of the mutations tested in the panel. The Hispanic community has certainly found this to be true. The Bonnell Foundation debuted a page for the Hispanic community. There are story’s, videos and a description about CF in both Spanish and English on our website.
Here to explain to us, in terms we can understand is Geneticist Amy Gaviglio. She is a certified genetic counselor and public health genetics consultant who has been working in the Newborn Screening arena for the past 14 years. She is currently a consultant with the Centers for Disease Control and Prevention, Association of Public Health Laboratories (APHL), and Expecting Health, amongst others.
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Please visit for health equity: https://noaacf.org/health-equity/terry-wrights-law/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts: https://jagindetroit.com/