Kendra Riley urges community to reach out to state representatives

When Scottsdale PR professional Kendra Riley learned that two of her three daughters had been diagnosed with a devastating rare disease, her family’s world was forever changed. Today, she’s using her voice to push for nationwide newborn screening so other families don’t face the same heartbreak.

According to the National Organization for Rare Disorders, Metachromatic Leukodystrophy (MLD) is a rare hereditary neurodegenerative disease that damages and destroys the myelin sheath, the protective fatty layer surrounding nerves. It is estimated to affect between one in 40,000 and one in 160,000 children, though rates are much higher in certain populations. Among the Navajo Nation, for example, the prevalence is one in 2,500.

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