Erin Frey to Lead CureDuchenne’s DMD Advocacy Efforts

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by Mary Chapman |

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The nonprofit CureDuchenne has chosen veteran advocacy leader Erin Frey to become its first director of Duchenne muscular dystrophy (DMD) advancement efforts.

In her official capacity as senior director of advocacy, Frey is charged with establishing relationships that promote CureDuchenne’s outreach, and connect Duchenne families and other stakeholders, including regulators, lawmakers, scientists, and other advocacy groups.

“We are very excited to have Erin join our team. This is a new position at CureDuchenne, and we look forward to working with her to open new doors that lead to innovative ways to better serve all stakeholders in the Duchenne community,” Debra Miller, CureDuchenne’s founder and CEO, said in a press release.

In Frey’s 20 years of experience, she has understood the importance of partnerships and alliances in goal setting and achievement.

“I came to know CureDuchenne over the past year and am excited to bring my expertise in advocacy to help advance the organization’s mission to find a cure for Duchenne and develop new programs that enhance care and services for the Duchenne community,” Frey said.

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A University of Illinois graduate, Frey formerly was senior director of external affairs and business development at Baebies, a start-up company working to advance newborn screening and pediatric testing. There, she worked with Baebies investor CureDuchenne to create a DMD newborn screening program being established at hospitals nationwide.

While at Baebies, Frey also was instrumental in bringing about change in public health newborn screening nationwide. She formed coalitions and worked with patient advocacy organizations and biopharmaceutical companies.

Previously, as a member of biopharmaceutical company AstraZeneca’s state government affairs team, Frey worked with 15 state governments, patient advocacy groups, and others to lobby for increased patient access to crucial therapies.

Frey started out as an executive recruiter for global executive search firm Heidrick & Struggles, then went on to build government and community engagement at a suburban Chicago health system. From there, she helped to establish the government and corporate social responsibility team at Aramark, the customer service company with business in food, facilities and uniforms.

CureDuchenne is the leading global nonprofit focused on funding research that seeks a cure for DMD. Duchenne is a muscle disorder that, along with Becker muscular dystrophy, affects roughly one in every 5,600 to 7,700 males in the U.S. ages 5 to 24, according to the National Institutes of Health.