Monday 23rd January 2017,
The Liz Army

Brain tumor awareness: you are doing it wrong

As a volunteer advocate with the National Brain Tumor Society I am often asked how people can help “spread awareness” about brain tumors.

My answer is simple: become an advocate.

According to Merriam Webster, advocates “argue for or support causes or policy,” and the National Brain Tumor Society is the only brain tumor nonprofit organization in the U.S. that is focused on issues dealing with public policy in the effort to strengthen research, advance therapies, and improve health care for brain tumor patients.

Why brain tumors and public policy?

The federal government is the largest funder of medical research for cancers and brain tumors. The more we focus on increased funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI)—including the center for Neurological Disorders—the closer we get to finding the causes and cure for our disease.

Awareness is passive

On the other hand, awareness is “knowing that something (such as a situation, condition or problem) exists.”

The awareness approach was popularized in the 1980s by the breast cancer community as a way to promote mammography as the most effective weapon in the fight against breast cancer. Now each October the helpful breast cancer campaigns focus on how men and women can take steps to detect the disease in its early states and then encourage others to do the same.

Not all diseases will succeed with this same approach.

As people passionate about brain tumors, we can shout about the existence of brain tumors until we are blue in the face, but without follow-up actions an “awareness” campaign falls flat and leaves patients and families feeling hopeless.

Advocacy is action-oriented

What we can do is become advocates for brain tumors, and that’s the path I am taking.

With help and direction from the National Brain Tumor Society I have:

  • Sent emails and letters to my elected representatives in support of funding for the National Institutes of Health (NIH)
  • Talked to my state and local government representatives about equal treatment of all forms of chemotherapy (score California!)
  • Traveled to Washington, D.C., to talk to Congress about issues facing the brain tumor community
  • Shared information about all of these issues with my friends and family through social media so they will in turn take actions

If we want to make a difference in the brain tumor community we must focus on efforts making the largest impact, and brain tumor advocacy—not awareness—is where it is at.

Watch out Congress. We are coming for you.

Get involved. Sign up for the National Brain Tumor Society’ email list for advocates.

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  • Candice

    I’m right with you!

    I’ve noticed that #BrainTumorThursday, as fantastic as it is for promoting awareness and support for those affected by brain tumors, does not always promote ways to be brain tumor advocates. I would love to find more ways to promote a move to action in this brain tumor community that nobody asked to be a part of.

    • I think that it’s all in terminology – and we do what we can in our own way. Some of us are limited in finances and cannot travel to D.C. to talk to Congress about brain tumor issues. So, whether I choose to call myself an advocate yet do different things than listed above (read: things that don’t cost money), doesn’t mean it’s wrong. :)

      • Liz

        Heather: Out of the action items listed, three out of four do not involve traveling to Washington, DC. (which I agree is expensive and not everyone should go, it would be a logistics nightmare).

        The first item and last item are actions that can be taken at a computer.

        As for talking to state representatives, you can do that from your district! This can be more powerful that visiting an elected in DC because you can bring a posse with you: friends and family members who will stand with you.