Public Policy Advocacy
Heather Shorten, MSW
Jennifer Lowe-Davis, J.D., CPDT-KA
Presenters
Heather Shorten is the Executive Director of Pompe Alliance, which she founded in 2018. She began advocating for rare disease issues in 2017, after being diagnosed in 2015. As Executive Director, she directs all operations of the organization, including media communications and advocacy. Additionally, she has spent over 15 years working with children and families in the child welfare system, specializing in the co-occurrence of child abuse and domestic violence. She is recognized as an expert in her field, testifying in court cases, training and managing social workers in the field and serving as a liaison and educator for community stakeholders. In this capacity, she presented at the National Stop Domestic Violence Conference in Australia. Heather’s paper regarding perpetrator accountability was published by the Australian and New Zealand Mental Health Organization, and she is a contributing writer for The Mighty. She has a Masters Degree in Social Work and B.A in Sociology from Cleveland State University
Jennifer Lowe Davis has spent much of her career advocating for good government, civil rights and child and animal welfare. She is a former Congressional staffer and registered lobbyist for multiple non-profit organizations. She has met with legislators, wrote legislative proposals, and submitted comments on proposed regulations. She has also provided testimony to Congressional Committees and state and local government hearings. Additionally, Jennifer has commented on these issues in a variety of media outlets, including the Wall Street Journal, Congressional Quarterly, and the Nonprofit Quarterly. In 2012, she left advocacy and opened her own canine behavior consulting business, Red Dog Run Behavior and Training. She is on the board of Pompe Alliance. She received her J.D. from Case Western Reserve University School of Law and her B.A. from Simmons College.
What is Pompe Disease?
Pompe disease is a genetic disorder in which complex sugar called glycogen builds up in the body’s cells. The disease results from the deficiency of an enzyme called acid alpha glucosidase (GAA), which breaks down complex sugars in the body. This buildup occurs in organs and tissues, especially in muscles, causing them to break down.
Source: clevelandclinic.org
About Pompe Alliance
Mission Statement
To provide supportive services, education and information to patients, caregivers, medical professionals and community stakeholders.
Current Programs
Why do we need public policy advocacy?
Advocacy Vs. Lobbying: What’s The Difference?
Advocacy encompasses a wide range of activities that influence decision makers. These activities include, but are not limited to:
Lobbying is a legal term referring to communicating directly or soliciting others to communicate with any official or their staff in the legislative or executive branch of government or in a quasi-public agency, for the purpose of influencing any legislative or administrative action.
What are some examples of lobbying?
What is not lobbying?
Public policy: a set of actions the government takes, or chooses not to take, to address issues within society.
These actions include: laws, rules, regulations, judgments, case studies, and government programs.
Why do we need good public policy on issues we care about?
Policy Issues
Pompe Alliance works on a range of policy issues.
Newborn screening is an issue where we have had some success.
Colorado Example: Advocacy in Action
How Your Organization Can Build a Public Policy Program… Without Being Public Policy Experts!
In creating our public policy program, we looked at all of the aspects of advocacy
You and your organization don’t have to be policy experts or professional lobbyists. This is about finding what works for you and your organization.
Adopting an Advocacy Program
This is what Pompe Alliance is working on now
Public or Member Education
Direct Advocacy
Grassroots Advocacy
Coalition Building
“There are 30 million of us in this country and if we work with one voice, we would be politically unstoppable”
Mark Dant, Everylife Foundation
Capacity and Network Building
Record Keeping
Closing
Thank you and we appreciate your time today. Please visit our website and social media pages for more information.
Website: www.pompealliance.com
Facebook: https://www.facebook.com/PompeAlliance/
Twitter: @alliancepompe
Instagram: @pompealliance
Heather Shorten: pompealliance@gmail.com