Heather Shorten founded Pompe Alliance in 2018 because she saw a need for a patient centered organization to educate and advocate for the Pompe community. 

 

She earned her bachelor's degree in Sociology from Cleveland State University in 1999. She received a master's degree in social work from Cleveland State University in 2004.

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She began advocating for rare disease issues in 2016 after being diagnosed with Pompe Disease in 2015. She directs all operations of the organization, including media communications and advocacy.

 

She frequently presents on issues related to the patient experience. Pompe Alliance has been working in collaboration with other organizations on mental health in the Pompe community, and in February 2025, she presented a poster at the WORLD Symposium. 

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Additionally, she was a presenter at the World Muscle Society conference in 2023, speaking on the Pompe patient experience and the leader of a patient organization. She has also presented for industry partners in conjunction with Rare Disease Day and Pompe Awareness Day. She is extremely passionate about equity in healthcare and has participated in several panel presentations on the topic. In 2024, she spoke on mental health at both the Duke Adult and Duke Pediatric Conference.

 

Prior to founding Pompe Alliance, she spent 15 years working with children and families in child welfare specializing in the co-occurrence of child abuse and domestic violence.

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