Members of Congress are happy to meet with their constituents, who, after all, are the people that they are in office to represent and serve. If you plan to be in Washington, D.C., you could arrange a meeting during your visit. However, a more accessible option is to visit your legislator in his or her district office. Each Member of the U.S. House of Representatives and Senate has one or more offices in their congressional district or state. These district offices are often a better place to meet with your legislator than Washington, D.C. They are not pressed with committee business or being called to votes as is likely to happen when Congress is in session. To find out background information about your legislator and the phone number and address of his or her district office, you may wish to visit the web site for Congress, found at www.senate.gov and www.house.gov. If you do not have access to the Internet, your local phone book should include a phone number for your legislator. Also, the U.S. Capital information switchboard (202-225-3121) can connect you to your legislator if you know his or her name.

Once you have obtained the necessary background information, contact the legislator’s district office to set up the appointment. Tell the scheduler or the district director that you would like to discuss some legislative issues involving HD with the legislator. Most Members of Congress return home almost every weekend and often have office hours to meet with constituents. In addition, “recesses” (or “work periods”) are scheduled throughout the year. Members of Congress generally return home for some part or all of the recess period. If you can only get a meeting with and aide, take it. That aide can become an important ally and advocate for you with the legislator who obviously cannot be an expert on every issues.

Once a meeting has been set, pick a particular issue that will be the focus of your meeting and, ideally, some concrete action that you would like your legislator to take. This action may be to sponsor or co-sponsor a bill, assign a member of his or her staff as a liaison to the local chapter, or to speak at or attend an upcoming chapter meeting (see important issues to discuss included in packet).

Tell the legislator, or aide, exactly what HD is. If ever there is a time to tell someone about the devastation of the disease this is it. Be reasonable, polite and factual at all times. Set reasonable expectations. Legislators have limited time, rarely make snap decisions and sometimes have to cancel meetings at the last minute. Remember, you are trying to build a long-term relationship with that person, so do not be confrontational, accusatory or demanding.

Also keep in mind what issues are dealt with at which level of government. Many of our concerns involve federal law, such as funding for the National Institutes of Health, Medicare funding and regulation, social security disability rules, and certain health insurance issues. Much of our day to day life is more affected by state laws, such as many of the Medicaid rules, most insurance issues, mental health services, guardianship and conservatorship laws. Some issues have both a federal and state component, including Medicaid funding and eligibility rules, genetic privacy and genetic discrimination.

The general guidelines for meeting with a Member of Congress apply equally well to your state and local legislators. And, as noted above, in many cases, the most important issues are often the ones closest to home. After the meeting, send a thank you letter. You may want to highlight issues that were discussed and the action that you would like the legislator to take. Send a copy of your newsletter to the legislator’s office and thank them again for the visit (see sample thank you letter included in packet). Most importantly – enjoy yourself! Do not be intimidated. These visits can be fun, interesting and educational – both for you and the legislator.