Tools & Training

Why Advocacy?

Advocacy pays off. Brain tumor advocates are working to ensure that the largest funder of brain tumor research in the country, the National Institutes of Health (NIH), has the funding it needs to support the promising research happening in labs across the US. They are also working to ensure that brain tumor patients have affordable access to life-saving treatments.

Public policy decisions are made every day that impact the lives of brain tumor patients, caregivers, family and friends. For example, the federal government makes decisions based on public input how much is invested in bio-medical research grants including those studying brain tumors. The federal government also makes decisions about what services Medicare will pay for and how long it will take for brain tumor treatments to be approved by the Food and Drug Administration.

Public policy decisions are directly tied to finding new therapies for brain tumors and improving the lives of brain tumor patients. Our community must be informed, involved, and indeed vocal about public policy.

Advocacy is a great way to meet others that want to fight back against brain tumors. As constituents of elected officials our voices count.

What does it mean to be an Advocate?

Advocacy is communicating to government officials on behalf of patients, caregivers, and all of us who have stake in eliminating brain tumors. Some advocates email elected officials from home. Many also attend meetings with legislators in-person and call them on the phone.

You can be an advocate for a few minutes or several hours at a time. In just 10 minutes you can email Congress, call both your Senators and U.S. Representative, and tell a friend about what you did and ask them to do the same. Advocacy can be done all year around. It also complements your participation in brain tumor related events including Rides, Walks, and Races.

How to be an Advocate

There are several ways you can make your voice heard. Below are some tips to help you write, call, or visit your elected officials.

Writing to Your Elected Officials
  1. Be personal – Let your legislators know about the personal connection you have to the specific brain tumor public policy issue you are writing about.
  2. Tell them what you want them to do – Be very clear about what exactly you want an elected official to do. For example, in 2011, the National Brain Tumor Society (NBTS) is writing legislators to urge them to maintain funding for the National Institutes of Health.
  3. Be brief – Writing a focused, persuasive, and personal letter will be appreciated.
  4. Use facts and figures you know – There is a lot of information about the number of people with brain tumors at www.braintumor.org. Remember to use the data to strengthen your main point.
  5. Thank them when appropriate – If a legislator has demonstrated support for the issue, it is highly recommended that they be thanked for their work.
  6. Be persuasive – In your letter, if you can, make a case for why the elected official should do what you are asking them to do.
  7. Save a copy of your letter – Sometimes you may get an email or paper letter back from the elected official. It can be helpful to see what you originally wrote. Also feel free to send a copy of your letter to advocacy@braintumor.org.
Calling Elected Officials
  1. To call a member of Congress at any time, you can use the number for the Capitol switchboard, 202.224.3121. The operator will ask who you are calling. Let them know which Member of Congress you wish to reach.
  2. State your name and be ready to prove you are a constituent by providing your home address.
  3. Be brief and to the point. “I’m John Smith. I am a constituent of Senator Talkingham and I am calling because I want her to support the National Institutes of Health by maintaining funding for it. Brain Tumor patients need NIH to be able to fund research working to find new therapies.”
  4. If you are asked a question you don’t know the answer to simply say you don’t know then get the information from NBTS and call them back. NBTS advocacy staff will assist you.
  5. Thank the legislator(s) when appropriate. If the legislator voted in support of your issue then say thanks.

Meeting with Elected Officials

Before the meeting:
  1. Planning and preparation are keys to success– It is important to work with NBTS staff and other volunteers to plan out the purpose of the meeting and the strategy for educating or persuading the elected official.
  2. Determine a group leader for the meeting.
  3. Decide on roles for each person attending the meeting.
  4. Prepare information to use in the meeting including: information about NBTS, the policy issue, the problem for which you are advocating a solution, personal stories.
  5. Determine in advance what material will be left behind for the elected official to use to learn about the issue.
  6. Make sure you arrive at the office at least 15 minutes prior to go over your game plan with other volunteers.
During the meeting:
  1. Be sure to properly introduce everyone in your group.
  2. Open about the importance of the problem for which you need the elected official’s attention.
  3. Provide the most important reasons you are seeking a particular policy solution and provide the data to support it.
  4. Most importantly – remember to ask the legislator for their support. It is ok to ask the legislator questions about their position on the issue. It is also acceptable to ask a legislator to defend their position if it differs from your views.
  5. Build productive relationships – The meetings are opportunities to create positive relationships for the future. The current policy issue will not be the last one you want to work on with an elected official.
  6. Don’t bluff.
  7. If you are asked for information you don’t have, just tell the elected official that you will get them the information they seek.
  8. Thank elected officials when appropriate.
  9. Do not be partisan as a volunteer of National Brain Tumor Society. Please do not make comments that are politically leaning or charged. NBTS works with elected officials in a nonpartisan manner.

Telling Your Story

Whether you are communicating in writing, via phone, or in person, it is important to share your connection to the public policy issue you are advocating for. Telling your story of how you are connected to brain tumors can be an emotional experience. If you feel comfortable, a few tips include for telling your story include:

  • Tell your story chronologically.
  • Describe how you are alike or different from those who would benefit from the public policy you are advocating for.
  • Be as brief as possible while still being complete.
  • Connect your story to what you are asking the elected official to do.

To learn more about being an advocate, contact us at advocacy@braintumor.org.