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CureDuchenne Taps Erin Frey to Lead Advocacy Efforts for Duchenne Muscular Dystrophy


CureDuchenne, the leading global nonprofit focused on funding and finding a cure for Duchenne muscular dystrophy, announced today it has tapped Erin Frey as Senior Director of Advocacy. In this new role, Frey is charged with building relationships and alliances that foster the health and outreach of CureDuchenne for families, as well as the myriad of other stakeholders, including regulatory bodies, legislatures, professional organizations, treatment developers and other advocacy organizations.

“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,” said Debra Miller, founder and CEO, CureDuchenne.

With over 20 years’ experience, Frey is an enterprising and resourceful leader who counts partnership as a key strategic pillar of innovation and forward movement toward successfully meeting goals, especially those that are mission-driven and truly make a difference.

“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,” said Frey.

Frey joins CureDuchenne from Baebies, a growth-stage start-up company focused on newborn screening and pediatric testing, where she served as Senior Director of External Affairs and Business Development. As an investor in Baebies, CureDuchenne worked closely with Frey to develop a Duchenne newborn screening program that is currently being rolled out in hospitals across the country.

During her stint with Baebies, Frey facilitated national and regional newborn screening coalitions and state policy strategies with biopharmaceutical companies and patient advocacy groups to effect change in state public health newborn screening across the United States.

Frey also held positions within AstraZeneca's State Government Affairs team working with state legislatures, patient advocacy groups and other stakeholders in a 15-state region. The issues for which the team lobbied were identified in partnership with patients and clinicians who needed the medicines to improve patients' quality of life, or in some cases, survival.

A graduate of the University of Illinois at Chicago with a BA in Psychology, Frey began her career as an executive recruiter for the Healthcare Practice at Heidrick & Struggles International Search Firm. She then built Government and Community Engagement functionality at a health system in suburban Chicago, moving on to help build the Government and Corporate Social Responsibility team at ARAMARK where she worked on healthy eating, workforce development and green cleaning initiatives.

About CureDuchenne

CureDuchenne is the leading nonprofit dedicated to extending and improving the lives of 300,000 boys worldwide who have Duchenne muscular dystrophy, a degenerative disease with no known cure. CureDuchenne uses an entrepreneurial venture philanthropy model to fund impactful research and accelerate human clinical trials. Through its CureDuchenne Cares program, CureDuchenne provides confidence to families seeking valuable resources, trains physical therapists and other health professionals on new standards of care and provides hope, support and empowerment to the Duchenne community. For more information, please visit www.cureduchenne.org.

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