Newborn Screening Advocacy with Dr. Mike Hu

National MPS Society: Our Voices

In this episode:

• Two of Mike's sons have been diagnosed with MPS II Hunter Syndrome.
• Mike paraphrases Steve Jobs, "The dots you cannot connect them looking forward, you can only connect them looking backward," when describing his journey with how his education, research, and career ultimately collide with his family life.
• Mike was born and raised in China before moving to the US for a post graduate program at the University of Austin, where he studied Molecular Genetics.
• His first job was as a product developer for a genetic testing company developing products to diagnose genetic diseases.
• Mike shares the basics of the newborn screening process and how results can be interpreted.
• Mike describes his sons' diagnostic odysseys, and how newborn screening could have impacted that part of their journey with MPS.
• Newborn screening is essential to early diagnosis and treatment. Awareness and education is important to public health.
• Each state decides what is screened for on their panels, currently about half of the states screen for MPS I (some currently screen for MPS II, as well).
• Mike stresses the importance of advocacy and encourages involvement with the National MPS Society Advocacy Committee.

The National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you like the podcast, we'd appreciate you telling a friend (maybe even two).