As a brain tumor advocate, you know the importance of contacting your members of Congress about the needs of the brain tumor community. From funding brain tumor research to enhancing resources for childhood cancer survivors, decisions made by our elected officials have an impact on the brain tumor community. Throughout the year, we ask you to call or email your representatives to educate them and ask for their support. Our collective voices have made a difference in the past year, helping to secure additional funding for the National Institutes of Health (NIH) and National Cancer Institute (NCI), and bringing awareness and new co-sponsors to the Childhood Cancer STAR Act.
It’s time to build on that momentum by meeting with your members of Congress when they are working in your district OR by meeting with their local staff any time. This toolkit will walk you through the steps of scheduling the meeting, recruiting others to attend with you, and educating yourself on our legislative agenda.
In addition to the toolkit below, please view this web training to further prepare you for your meetings.
Follow the steps below and let your members of Congress know how they can take action to support brain tumor patients and families in their district.
Questions? Please contact Kacey Troy Ribnik, Research and Advocacy Manager, at firstname.lastname@example.org or 520.762.4544.
Learn the Issues
The August Congressional recess is a chance to advocate with our members of Congress on medical research funding and supporting the Childhood Cancer STAR Act. Below are links to information sheets on each of these issues, as well as a link to our state specific fact sheets, which provide general information about brain tumors as well as information specific to your home state.
The links below are downloadable PDFs that you should bring with you to any meetings or drop-offs.
The first step is to call your elected officials’ district offices to schedule your meetings. Here is a step-by-step guide to setting up your meetings:
- Find contact information for your Congressman or Congresswoman, and/or your Senators
- Call the office closest to your home and let them know you’d like to schedule a meeting while your representative is in the district.
- Here is a sample script: “Hi, my name is (name) and I’m a constituent as well as an advocate with the National Brain Tumor Society. I’d like to schedule a meeting with (Congressman/Senator X) while he/she is home to discuss the concerns of the brain tumor community. Could someone help me do that?
- If you are able to schedule a meeting over the phone, that’s great! Sometimes they’ll have someone call you back, or ask you to email the office scheduler. If you leave a message or send an email and don’t hear back within a week, call back, let them know who you emailed or called previously, and go over your script again.
- Once your meeting is scheduled, contact us at email@example.com and we can help you reach out to other advocates in your congressional district or state to join you at the meeting. Also, feel free to invite your contacts in the district or state who have also been affected by brain tumors.
- Congratulations! That’s the first step in building your relationship with your elected officials!
Planning and preparation are keys to success
- If you plan on attending with friends, family, or other advocates in the area, talk together to create your plan.
- Determine a group leader and decide who will cover the different topics that need to be discussed.
Research your elected official
- In addition to reading the information on his or her Congressional website, ask your friends and neighbors what they know about your Representative.
- Since your member of Congress lives in the area, you could have friends in common, have attended the same school, or go to the same place of worship. It’s good to know that information and mention it during your meeting to make a personal connection.
Prepare meeting materials
- Print out our one page information sheets that you will leave with the office (see links above in “Learn the Issues” section).
- Print out talking points to use as a reference.
- If you’re attending with others, print out the meeting prep form to decide who will discuss the different topics during the meeting.
- Practice how you will share your story (see below for more information).
Tips for a Successful Meeting
Make sure you arrive at the office at least 10 minutes prior to the scheduled meeting time, both to find the office and let them know you’re there. Also, if you are attending as a group and haven’t met in person before, it may be helpful to meet even earlier at a location nearby to review your plan for the meeting. This meeting prep form may help you to determine the flow of the meeting.
The best way to start the meeting is to thank the staff member or member of Congress for their time. Let them know you’re advocates with the National Brain Tumor Society, introduce yourselves and tell them where in the district you live.
For a guide to the outline of the meeting, review our meeting prep form. While you don’t have to stick to that exact plan, it’s helpful to have an idea of how the meeting will run.
A few other tips when meeting with elected officials and/or a member of their staff::
- If you have something in common with your Representative, like you went to the same college, use that as a way to connect with your Representative.
- Be personal. Let your legislators know about the personal connection you have to brain tumors. Your story has value and impact. It is what your Representative will remember most about meeting you.
- Your goal is to connect with your Representative so that he or she is moved by your story and will vote in favor of legislation and make decisions that supports your needs and the needs of the brain tumor community.
- Use this time to educate your Representative on the challenges of a brain tumor diagnosis and how it has affected your life as a caregiver, patient and/or survivor.
- Build productive relationships – The meetings are opportunities to create positive relationships for the future. This meeting will likely not be the last time you speak you’re your elected official.
- If you are asked for information you don’t have, just tell the elected official that you will get them the information, and contact the National Brain Tumor Society after the meeting and we will provide assistance in answering their question.
- Thank elected officials when appropriate.
- Try to stay on the subject of the issues you came to discuss. Sometimes the subject can move into other issues and that will eat up your time. You can always respond by saying, “I know those are important issues, but I would like to talk more about……”
- Do not be partisan. Please do not make comments that are politically leaning or charged. National Brain Tumor Society works with elected officials in a nonpartisan manner.
Telling Your Story
The most important thing you can do during your meeting is to share your connection to brain tumors. Telling your story of how you are connected to brain tumors can be an emotional experience. A few tips for telling your story include:
- Practice sharing your story before the meeting. For some, you may not be used telling it in a succinct way.
- You may become emotional while telling your story and you might find it difficult. That is okay and acceptable.
- You will not have time to share your whole story, so think about the parts that would be the most striking to someone hearing it for the first time. Is there a way the staff person or legislator could relate to parts of your story?
- If you are comfortable, read our policy issue briefs. Is there a way to relate your story to one of our asks? For example, would more treatment options have changed the course of what happened, and if so, let them know that we need more research to discover new and better brain tumor treatments.
- Practice sharing all of this in a short 3-5 minutes.
By following the tips above, you can have a productive meeting with your elected officials during this August recess. Good luck! And don’t forget to tell us how it goes by emailing firstname.lastname@example.org
If a meeting time isn’t available with your member of Congress or a staff member, you can stop by their district office during regular business hours to drop off information on the policy matters affecting the brain tumor community.
On the same websites, you can find a listing of office locations. Find the location in your state, and if there are multiple locations, pick the one that is closest to you.
Print out a copy of our issue briefs and state specific fact sheets (see above for links to these documents) to bring with you to the office, and bring either a business card or a notecard with your name and address on it. Once you’re there, you can speak to the staff member at the front desk. Here’s a suggestion on what you could say:
“Hi, my name is ____________ and I live in _______. I am a constituent of ______ and a volunteer brain tumor advocate with the National Brain Tumor Society. I wanted to leave some information here to pass on to the Representative/Senator while she/he is home. These flyers have information on the policy matters affecting the brain tumor community, including medical research funding, and pediatric cancer research and drug development. I’ve also included information on how brain tumors affect our state. Could you please pass this on to (Representative/Senator) (NAME)? Thank you for your time and attention.”
Questions? Please contact Kacey Troy, Research and Advocacy Manager, at email@example.com or 520.762.4544.
Relationship building tip!
While you’re there, ask for the business card of the person who handles constituent requests related to health care. Follow up with an email to that staff person, letting them know you dropped off the information. If you build a relationship now, you may have an easier time getting a meeting next time!
Make sure to share your experiences with other advocates, ask questions, and find more resources by utilizing social media including Facebook and Twitter. Use the hashtag #btaction and be sure to follow @NBTStweets
Finally, you can check if any of your Senators or Representatives are on Twitter or Facebook (most are!) and send them thank you messages for meeting with you, or links to more information.
Many members of Congress hold Town Hall Meetings in August and other times throughout the year as a chance to hear from many of their constituents at one time. To find out if there is a meeting scheduled in your area, call your Representative or Senator’s office and ask if he or she will be hosting any Town Hall meetings.
- Once on their website, you can sign up to be on their mailing list and get information on all upcoming events.
- Depending on the format of the meeting, you can either ask a question during the meeting, or speak to your elected official or a member of his or her staff prior to, or at the conclusion of, the meeting.
- Here are some tips to help you prepare for successfully participating in a Town Hall Meeting:
- Print out our issue briefs that you will leave with a staff member or the member of Congress
- Print out talking pointsto use as a reference
- Write down facts and statistics you want to share. For state specific brain tumor facts, visit this page.
- Practice sharing your brief personal story.
At the Town Hall Meeting:
- Raise your hand!
- Most Town Hall meetings allow constituents to raise their hands to ask questions. If it’s very crowded, not everyone will be called on, but it’s worth trying!
- If you get called on, thank the legislator for the chance to speak.
- Share your name, your city/town, and briefly share your connection to brain tumors.
- Share a statistic about brain tumors in your state.
- Ask a question. Here are a few ideas:
- Brain tumor patients have few treatment options, and survival rates for certain brain tumors are low compared to other cancers. Can we count on your support for increased funding for the National Institutes of Health and National Cancer Institute in the upcoming fiscal year budget?
- Brain tumors are the leading cause of cancer death in kids 0-19. For those who survive, they are often faced with late effects of their disease or treatment, including secondary cancers or organ damage.
- Can we count on your to support full funding of the Childhood Cancer STAR Act in FY2019, which will help stimulate more effective pediatric cancer research and improve quality of life?
- Remember to be respectful. You want to leave a good impression on the legislator and his/her staff so that future interactions are positive. It’s also a chance to find support from other audience members, so be receptive to others who approach you after the meeting.
After the Town Hall Meeting:
- If you don’t get called on, find a staff person to speak with. Even if you do get called on, you should still find a staff person to give your handouts to and get their business card.
- It is important to build positive relationships with the legislator’s staff members. They will be the ones answering the telephone or responding to your email in the coming months and years, and also have the ear of the legislator when it comes to policy matters.
- Also ask if they would be the best person on staff for you to follow up with. If not, ask if they can put you in touch with the most appropriate staff member.
- Make sure to follow up after a Town Hall Meeting with a phone call or email to the congressman’s office, preferably to the staff member you met.
- This is another chance to share your story and ask for support of the policy issues you are advocating for. It also will help solidify the relationship and allow you to continue the dialogue in the coming months and years.
Note about Town Hall meetings: Town Hall meetings have become more popular for constituent groups in recent years, and often can become contentious if the groups do not agree with the legislator. As a volunteer of the National Brain Tumor Society, do not be partisan. Please do not make comments that are politically leaning or charged. National Brain Tumor Society works with elected officials in a nonpartisan manner.
Questions? Please contact Kacey Troy Ribnik, Research and Advocacy Manager at firstname.lastname@example.org or 520.762.4544.