Childhood Cancer Advocacy

You've survived cancer and your experience may still be a huge presence in your life and define a lot of who you are. There may come a point where you want to do something to help other childhood cancer survivors facing the same issues and challenges as you.

Or maybe you've moved on. You may want to forget you had cancer or don't have time to think about it since you're busy dealing with so many other things happening in your life.

No matter how you feel or where you are in life or your survivorship, you have the potential to make a real different in so many different ways as an advocate for yourself and for other childhood cancer patients, survivors, and families. You can turn your cancer experience into something positive by taking action and adding your voice to the fight against childhood cancer.

Think about it.

Advocacy Overview

What is Advocacy?

• Advocacy can be as simple as doing something to support a cause, community, organization, or someone you care about.
• Advocacy draws attention to a specific issue or promotes a cause or initiative.
• Advocacy is a way to make progress, respond to challenges and solve problems.
• Advocacy is people bringing about change by shaping or influencing policy, positions, or programs of an institution.

What is Self-Advocacy?

In the context of cancer survivorship, self-advocacy can mean:

• Speaking up for yourself.
• Being informed and knowing how to get information regarding your healthcare.
• Playing an active role in your healthcare.

Who is an Advocate?

• Someone who speaks in favor of or recommends a position.
• Someone who supports or defends a cause or organization.
• Someone who argues for or pleads on another's behalf.
• YOU.

Why is Childhood Cancer Advocacy Important?

• Cancer remains the leading cause of death by disease in children. This is more deaths than from asthma, diabetes, cystic fibrosis, and AIDS combined.
• Survival rates vary for different types of childhood cancer.
• Two-thirds of all childhood cancer survivors will experience a late effect from their disease or treatment.

The Importance of Advocates: Why be Involved?

• You want to make a difference.
• Your story personalizes an issue.
• Your experience is a real example of why change may be needed.
• Your story may inspire others to get involved.

Basic Elements of Advocacy

• Issue (What's the problem?)
• Objective(s): specific, measurable, realistic, timed (What do you want?)
• Message (What do you want people to hear?)
• Data (What facts do you have to support your message?)
• Audience (Who needs to hear the message?)
• Allies/Partners (Who can help you achieve your goals?)
• Available Resources (What do you have to help reach your goals?)
• Evaluation (How do you know your advocacy effort is working?)

Types of Advocacy Activities

• Letter writing campaigns, letters to the editor
• Public hearings
• Demonstrations
• Awareness campaigns
• Involvement on committees or boards
• Fundraising

What Makes Advocacy Effective?

• Deep understanding of the issue.
• Focused and realistic objectives.
• Right place, right time, right partners.
• Passion, dedication, persistence.
• A personal connection to the issue.

For more on childhood cancer advocacy, click the image below for a PDF of the Children's Cause presentation titled "Helping Survivors Make a Difference Through Advocacy."