Heather Shorten

Heather is the founder and Executive Director of Pompe Alliance. She earned her bachelor’s degree in Sociology from Cleveland State University in 1999 and a master’s degree in Social Work also from Cleveland State University in 2004.

 

Heather began advocating for rare disease issues in 2016 after being diagnosed with Pompe Disease in 2015. As Executive Director, Heather direct all operations of the organization including media communications and advocacy. Additionally, she has spent 15 years working with children and families through child welfare, specializing in the co-occurrence of child abuse and domestic violence.

 

Heather has been recognized as an expert in her field, testifying in court cases, training and managing social workers in the field of child welfare and serving as a liaison and educator for community stakeholders. In this capacity, Heather has presented at the National Stop Domestic Violence Conference in Australia.

 

Additionally, her paper regarding perpetrator accountability was published by the Australian and New Zealand Mental Health Organization, and she is a contributing writer for The Mighty.

Contact Heather

Areas of Advocacy Expertise:

  • Nonprofit Organization

  • Story Telling

  • Advocacy Partnerships outside of disease-specific community

  • Public Speaking

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.