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Contact: Taylor Holgate (Burr) 202-228-1616

Wednesday April 6, 2016

WASHINGTON – Today, Senator Burr (R-NC) spoke before the Health, Education, Labor and Pensions (HELP) Committee on the need for rare disease treatments.

WATCH: Sen. Burr speaks on treatments for rare diseases

Senator Burr highlighted the example of Taylor King from Charlotte, NC who suffers from Batten disease, a rare genetic condition for which no treatments are currently available. Taylor’s mother, Sharon King, started Taylor’s Tale, an advocacy group dedicated to combatting Batten disease and advocating for the rare disease community.

“Taylor’s fight is our fight. And the fight isn’t over,” said Senator Burr. “Innovation is at the heart of how we are going to help Taylor win her battle and combat so many diseases and disorders that impact families in North Carolina and across this country. But it’s up to us to step up to this challenge, and I hope we do so on behalf of Taylor and all of the other Americans like her who are counting on innovation to discover the cure that will help them win their battle.”

You can learn more about Batten Disease and the King family’s efforts to spread awareness by visiting the Taylor’s Tale website.