Visiting Your Federal Representative
Visiting your Federal representatives is an important way to promote visibility of the dystonia community to our members of Congress. Here are some tips to help you plan your visit.Pre-meeting Activities
Familiarize yourself with the DMRF’s public policy goals by clicking here.
Familiarize yourself with what is known about dystonia by reading the brochures and other information available from the DMRF. However, rest assured that no one expects you to be an expert.
If possible, visit your legislator in a group for greater impact. Select a spokesperson. Meet with the group beforehand to insure everyone is on the same page and will speak with one voice.
Send a letter/fax/email to your representative’s local office requesting a face to face meeting with the Representative/Senator, or a member of their staff.
State in the letter that you are a constituent and give your address and telephone number. Also tell them that you or your loved one has dystonia and that you want to discuss the need for dystonia medical research. The letter should state that you are also a member of the Dystonia Medical Research Foundation.
Follow up with a phone call if you don’t get a response within two weeks.
Meeting Activities
Arrive on time and make sure everyone turns off their cell phones to eliminate interruptions. This is extremely important!
Introduce yourself and the members of the group to the representative or staffer and state where in their district that each member resides.
Each person should briefly tell the representative/staffer what kind of dystonia you have, how long you’ve had it, and how it affects your life.
State the public policy goals of the DMRF and the important need for an increase in dystonia medical research fundingthat exceeds inflation.
Provide the representative/staffer with brochures about dystonia.
Answer questions as accurately as you can. If you don’t know the answer, just say so and offer to get the information as quickly as possible.
Ask the representative directly for their assistance and ask if them if they can support increased funding for dystonia research.
Post Meeting Activities
Send a thank you letter and ask to be kept informed about the issue of health care funding, particularly dystonia research.
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