Writing to Members of Congress is among the easiest and most effective ways for the Spinal Muscular Atrophy (SMA) community to communicate with policymakers on issues of interest and priority. Written communication may be sent to Congressional offices via email, fax, or the U.S. Postal Service. If prepared correctly, correspondence can result in garnering support for Families of SMA’s public policy priorities.

When writing to policymakers, it is best to use personal stationery or your personal email account. For all forms of communication, include your full name, return mailing address, email address, and phone number. Keep a hard copy of what you send because sometimes faxes, emails, or letters are lost and you may need to send a second copy to ensure a response.

Top Ten List

1. Always be polite. When addressing correspondence to any government official, be sure to use the proper forms of address (see the end of this document). Even if you are angry, frustrated, or disappointed, use a polite tone and appropriate language. Do not be threatening, confrontational, or rude. The most effective way to communicate with your Members of Congress is the same way you communicate with your colleagues, neighbors, family, and friends – clearly, concisely, and with respect and honesty.

2. Be clear as to whom you are and why you are writing. In the opening sentence, make your request specific and clear and identify yourself as a registered voter, constituent, and someone who has been personally affected by SMA. For example: “As (a parent/relative of) a sufferer of SMA who lives, votes, and works in your district, I am writing to request your support for increased funding for SMA research at the National Institutes of Health.” If you know the member or a staff aide personally, say so at the beginning of your message; this may alert the aide reading your correspondence to give your message special attention. If you are in a leadership position (e.g., chapter president, board member), indicate your title and how many families you represent.

3. Be concise and informed. To the degree possible, try to keep your letter to a single page. You do not need to be an expert on the legislative issue at hand or the legislative process, but you should be familiar with the basic facts and points (i.e., the name of the legislation and the associated bill number and why it should be supported or opposed). This information can be found at on the Families of SMA website. If you are requesting that the policymaker cosponsor a particular measure or are writing to express disappointment at a particular vote that the policymaker cast, check the list of cosponsors and the vote record first at THOMAS to ensure that you have the most up-to-date information and all of your facts straight.

4. Personalize your message. Remember, you have firsthand knowledge of what it is like to confront the challenges associated with providing care for a child afflicted with SMA or living with SMA. As such, you have many experiences to share. Tell your own story and/or that of your child and explain the relevance to the issue at hand. Generic form letters and postcards are “tallied” by a Congressional office to get a sense of the mood of the electorate, but they often do not elicit a written response. Personal stories and illustrations of local impact have greater affect on policymakers and their staff than statistics and generic examples. Moreover, personal stories often are what spur policymakers to action. The reality is that our policymakers often legislate by anecdote. It is always best to use your own words and experiences when attempting to influence the legislator’s response or vote. If you are using a template letter, please take a few moments to personalize it. Also, if you can, include relevant state or local information to explain how the issue affects your community.

5. Be honest and accurate. If you are including statistics or other scientific information, verify your sources and have them readily available if the Congressional office follows up and wants additional information. Also, be sure not to exaggerate the situation or issue you are discussing; do not oversell the policy solution you are advocating or overstate the consequences if the policymaker does not do what you request. Suggesting a “doomsday scenario” if action is not taken lessens your credibility.

6. Be modest in your request. Although you may wish to address multiple issues, do not include everything and the kitchen sink in your communication. It is best to focus on one or two issues that are of top priority. A concise communication likely will be clearer, and policymakers and staffers will be more receptive to your letter because you have not overwhelmed them with too many requests.

7. Be of assistance and serve as a resource. Policymakers and their staffers are frequently overworked and overwhelmed, so offer your assistance to them; they will appreciate your input and help. If you have an article of interest or relevance, include it with your correspondence or refer to it and indicate that you would be happy to provide it should they be interested. Remember, you know more about SMA than they do, so offer to make yourself available as a resource if they would like to acquire more information.

8. Express appreciation. Too many times we forget to thank Members for their work. If in response to earlier correspondence you receive a letter informing you that the Member shares your views or took the action you requested, acknowledge that in the letter or write back expressing your thanks for the response and support. Or, if you learn through the newspaper, the Families of SMA website or other means that the policymaker recently cosponsored a bill you support or voted the way you had hoped, send a letter expressing your pleasure at his or her action. Finally, be sure to close all correspondence with an acknowledgment and thanks to the Member for his or her attention to your concerns.

9. Ask for a response. Because policymakers and their staffers work for you, you have every right to politely ask for a response and to hold them accountable if your communication goes unanswered. Entire systems, processes, and staff exist in Congressional offices to respond to constituent input. It is important to note, however, that because of the volume of constituent input, it could be weeks or months before you receive a response. Make sure to indicate towards the close of your correspondence that you would greatly appreciate a written response regarding the policymaker’s views on the issue or legislation you addressed.

10. Be sure to follow up. If you do not receive a response in a timely fashion (in excess of a month for most offices, a bit longer for Senators from large states like California and Texas), follow up with the office by phone or with another letter (fax is best) and attach your original (make sure to keep or print a copy for your records before you send it off). Indicate that you have not received a response and are requesting one. If you receive an unsatisfactory response to your correspondence, meaning that you feel that your question went unanswered, write or call again to express appreciation for the response and be polite, yet firm, in communicating that the response was not what you had anticipated or requested. Reiterate your points and address any concerns or points the policymaker has made on the issue in the correspondence.

Other Tips

Keep in touch with the offices of your Members of Congress so as to establish a relationship and make yourself available as a local resource on SMA. There are times when you and an elected official will have to agree to disagree, but over time, you also may find that the policymaker may be supportive and helpful on other matters. Frequently, the best friends of a particular group or organization were not always allies, but due to a combination of advocate tenacity and a history of being respectful, providing reliable information, and making a compelling case, a group has won over terrific champions.

Specific Tips About “Snail Mail”

As a result of the fall 2001 anthrax attack, the manner in which the U.S. Postal Service mail is handled by Congress has changed. Most of the incoming mail is irradiated to ensure that it is safe for handling by Congressional staff and Members of Congress. This process takes quite a while and often damages the contents. Therefore, for most communication, sending correspondence by email or fax is advised. Also, enclosing items such as photographs, original articles, or other documents is not recommended; it is best to save these items for hand delivery or drop them off when you have a meeting in the Member’s office.

Specific Tips About Email

Each Congressional office maintains a different policy about how email from constituents is handled. Most Members of Congress have a public email address to which email may be sent. To access the email addresses, you can visit the individual Member’s website at the House website or the Senate website. Many Congressional offices provide a generic, automatic acknowledgement that your email has been received, but will follow up with a specific email response to your issue or a letter via the U.S. Postal Service. A handful of offices still do not respond individually to email but count the input and inform the policymaker how many people have written in on the particular topic.

Proper Forms of Address for Members of Congress

Members of the United States House of Representatives

The Honorable [Full Name of Member of Congress]
United States House of Representatives
Washington, DC 20515

Dear Representative [Last Name of Member]:

United States Senators

The Honorable [Full Name of Senator]
United States Senate
Washington, DC 20510

Dear Senator [Last Name of Senator]:

Finally, you can reach your Members of Congress in the following ways:

• By phone through the U.S. Capitol Switchboard at 202-224-3121.
• By emailing your U.S. Representative through the House website. 
• By emailing your two U.S. Senators through the Senate website.
• By visiting the Families of SMA website for alerts on priority issues, model correspondence to send to federal policymakers, and quick links and information about how to contact your Congressional delegation.

Families of SMA would like to thank the Oncology Nursing Society for making available the content of this Tip Sheet.