PWSA | USA Voices Support for Ally’s Act

Ally Tumblin, a fourth grader in Colorado, was born without a right ear and ear canal, a condition known as Microtia Atresia. The only way she can hear is a with a specialized bone-anchored hearing device that costs between $5,000-30,000… and none of it is covered by insurance.

Ally, motivated to change the law and the lives of thousands of other kids and adults with Microtia Atresia, wrote to Representative Joe Neguse (D-CO). Moved by Ally’s plea, Rep. Neguse introduced H.R. 5485, a federal bill named after Ally. “It essentially says that private insurance companies will ensure that this device is covered from here on out.”

Much like Microtia Atresia, individuals diagnosed with Prader-Willi syndrome require lifelong supports and services. That is why Prader-Willi Syndrome Association | USA demonstrated our solidarity with Ear Community and our support for the passage of Ally’s Act (H.R. 5485) to ensure that private insurance companies provide coverage for osseointegrated hearing devices.

While the PWS community might not have the resources of groups with greater numbers, we know change is still possible. “It’s so meaningful to have the Prader-Willi Syndrome Association | USA join in the efforts for this legislation,” said Katie Wallace, Legislative Assistant for Congressman Joe Neguse (CO-02).

“Your endorsement shows a genuine passion for not only wanting to help children and adults in varying communities no matter what their challenges are, but for also wanting to be supportive of other organizations in their advocacy efforts,” said Melissa Tumblin, Ally’s mom and Founder / Executive Director of Ear Community.

People in Congress make better and more comprehensive decisions when a diversity of voices is included. To learn more about our public policy efforts or voice your support, visit:

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