Huntington's Disease Advocacy Center

The Political Activist  

Welcome to the political action page of HDAC. The goal is twofold. First it is to make everyone aware of the political issues affecting families that must deal with HD. But most important is to provide to you the information you need in order to influence our elected decision makers.

Although there will be a few that disagree, most people will concur that domestically a major reason for the existence of government is to help those who cannot help themselves. In the arena of HD there are many families that are devastated financially and emotionally by this terrible disease. In this area a compassionate, helping hand should be extended by the people of the U.S. through their federal government. In this area we can help each other lobby for our government to do what's needed and to eliminate the nonsensical rules and regulations that destroy families instead of helping them.

Taking Action

The following links provide outstanding information regarding how to make an impact on the political scene. It would be well worth your time to study these articles. This information is provided by Common Cause. Common Cause is a nonprofit, nonpartisan citizen's lobbying organization promoting open, honest and accountable government.

How to Lobby Your Elected Officials (and other ways to make your voice heard).
How to Prepare for a Meeting With Your Legislator
Reaching and Building Coalitions

Who to Contact

The following are links to members of government that want to hear your views on bills weaving their way through the bureaucracy. If you need an example of composing effective correspondence check out sample correspondence.

Federal Executive Branch and Senate Public Health Committee
Contacting your State's Congressman
Determining Who To Contact

Other Sources of Political Information

Hot Medical Links - Organizations and resources providing additional information on medical research.
Center for Patient Advocacy (registration required)
Genetic Information and the Workplace

Call to Action

HDAC is in the process of building an advocacy agenda to support HD families.

Please send us your ideas. We will be developing an agenda which addresses 1) Social Security Disability, 2) Genetic Discrimination in the Workplace ....

Email: Marsha Miller at or Steve Ireland at

Bills Being Considered

We will soon be listing the bills of concern. If you know of any new bills that are not listed (that you want support for or would like to fight against), please send an e-mail to me at The only prerequisite is that they in some way, shape or form have an impact on the HD community.

I also wouldn't expect that everyone would necessarily agree on whether a bill should be supported or fought against. So in the interest of fair and equal treatment, if there are rational opposing views on a bill I will include the perspectives of both sides and let the reader decide for themselves.

You can search for pending legislation at THOMAS.

Prepared for Huntington Disease Advocacy Center, Copyright © 2003.