Advocate for Children with Birth Defects

  • How you can help

    If your life has been affected by a birth defect, you have a unique perspective and passion to share with the world, and that is a powerful thing. Sharing your story can help raise awareness of birth defects and, in turn, impact other families in your local community.

  • Be an advocate

    Have you ever wondered what you can do to help protect the health and safety of children with birth defects in your community and the wider world? Children have no vote. But they do have a voice — yours. Advocate by sharing your story with elected officials and the public to create change.

    Advocacy can improve the lives of children with birth defects by:

    • Serving as the voice of children as decisions are made that affect their health and welfare
    • Educating the public and elected officials about issues important to children with birth defects and their families
    • Helping policymakers develop viable solutions to problems

    Community advocacy

    This type of advocacy draws a community’s attention to important issues at a local level (such as neighborhoods, schools and healthcare facilities). Community advocacy works by gaining support from our fellow citizens and elected representatives to bring about change.

    Legislative advocacy

    Advocacy means “to speak up.” Legislative advocacy is speaking up for another or championing a cause in order to change public policy. As citizens, we have the ability to change laws, including those that affect children. We can do this by voicing our concerns to our legislators – writing letters, making phone calls and/or speaking in front of committees.

    The following websites can help you identify your legislators:

    • Pennsylvania: legis.state.pa.us
    • New Jersey: njleg.state.nj.us
    • Delaware: legis.delaware.gov
    • To learn the names of your two U.S. Senators and one U.S. Representative, go to www.senate.gov, and www.house.gov. Use the search functions “Find Your Senators” and “Find Your Representative.”

    When contacting legislators by phone:

    • Identify yourself by name and home address.
    • Identify the bill you wish to talk about, by name and number if possible.
    • Briefly state your position and how you wish your legislator to vote.
    • Ask for your legislator’s stance on the bill or issue and ask for a commitment to vote for your position.
    • If your legislator needs additional information, gather supporting facts and get them to your legislator as soon as possible.
    • If the legislator is away from the office, leave a message or talk to an aide.

    When contacting a legislator by letter, fax or email:

    • State your position clearly in the first paragraph by asking your legislator to do something specific, such as sponsoring a bill or voting for or against a measure.
    • Personalize your communication by explaining, as clearly and passionately as you can, why this matters to you.
    • Write briefly and refer to bills by name and number.
    • Sign your letter with your name, home address and phone number so that your legislator knows if you are a constituent and can contact you.
    • Send a thank-you note.
    • Address your letter as follows:

    When writing to a U.S. senator or state senator:

    The Honorable Mary/John Doe
    (mailing address here)

    Dear Senator Doe:

    When writing to a governor:

    The Honorable Mary/John Doe
    (mailing address here)

    Dear Governor Doe:

    When writing to a U.S. representative, state representative or assemblyman:

    The Honorable Mary/John Doe
    (mailing address here)

    Dear Ms./Mr. Doe

  • Contact your local media

    The best way to get your voice heard is by “pitching” your local media outlets. A pitch is a letter to a newspaper editor or writer that sells your story idea and convinces them to call you for an interview. It should tease your story, including the most important information but not every detail.

    Newspapers, magazines, and radio and TV stations rely on pitches from people like you to guide the issues they cover. They receive many pitches every week. Below are a few tips to ensure yours stands out from the crowd.

    1. Identify local media outlets that might be interested in covering your story.
    2. Look on the media outlet’s website for the reporter who would most likely cover the topic you’re pitching, e.g., health/medicine reporter. This should be your main point of contact. You can also call the news desk and ask to speak to an editorial assistant, who should be able to connect you to the best person to cover your story.
    3. Write your pitch.
      • Keep it short.
      • Highlight the local angle. How does a national issue affect your local community?
      • Put a face on your story. Describe your family and its connection to the community as you relay the experience you’ve gone through.
      • Lead with emotion, follow with facts. Use the information shared in this toolkit.
      • Give your story an element of newsworthiness and timeliness. Why now? It could be a related awareness day/month or your child’s birthday.
      • Explain how your story is different from other topics covered in the past.
      • So much in the news can be negative. The media is always looking for positive, human-interest stories that are uplifting. Position your story and the Center as part of the solution.
    4. Send your pitch to the appropriate person, along with pictures.
    5. If your pitch is tied to an event, be sure to give the media lead time (a few weeks, if possible) to cover it, and let them know that photo opportunities will be available.
    6. Include your contact information and let the reporter know they can call you any time with additional questions. Also be sure to mention that the Center’s experts are available for interviews, as well.
    7. Thank them for their time.

    Our Center has a dedicated PR specialist who is happy to help you share your story and connect reporters with our experts. For more information, contact Ashley Moore at 267-426-6071 or moorea1@email.chop.edu.

  • Write an op-ed

    Newspapers often publish opinion pieces (called op-eds) by people in their community who are passionate about a cause. It can be a very powerful and effective tool to raise awareness and shape public opinion. Op-eds are read by fellow citizens and even elected officials as a way to stay informed on the issues important to their constituents.

    By writing about how a birth defect has affected your family, you can help raise awareness of birth defects, add a much needed perspective to the growing healthcare debate, and offer hope to families going through a similar experience.

    Here are some tips for writing an op-ed:

    • Keep it short: 500 to 700 words is a good range to aim for.
    • Keep it simple: Use simple words and short sentences, and make your main point up front, in the very first paragraph. Avoid jargon and overly technical language.
    • Tell your story: Personal stories are powerful and can help bring about real change. If you or someone you know has been affected by a birth defect, write about your experience.
    • Add a call to action: Tell readers what actions you want them to take. For example: “Write your legislator to show your support for increased research into birth defects.”
    • Use statistics: Personalize your letter with facts and statistics about birth defects in general, as well as specific statistics related to the particular birth defect that affected your family.
    • Proofread it first: Proofread your op-ed carefully before submitting it to the newspaper. Ask a friend or family member to proofread it, too.
    • Include contact information: Provide your name, email address and phone number.
    • Follow submission guidelines: Op-ed submission guidelines can usually be found on the op-ed page of your local newspaper or on the paper’s website.
  • Share your story online

    Social media is a great, easy way to connect with like-minded advocates and spread the word among people who might not otherwise know that the birth defect exists.

    Tell the story of your child’s diagnosis and the care you received at CHOP on social networking sites like Twitter, Facebook and Google+.

    Blogs are another great way to share your insight with others by telling your story and connecting them to the Center for Fetal Diagnosis and Treatment. If you have a blog, raise awareness of birth defects by writing about your child’s medical journey and linking to CFDT videos and resources. If you don’t already have a blog, it’s easy to start one using a free blog-hosting service like Blogger or WordPress.

    Getting started:

    • Retweet us. Follow us on Twitter and when we tweet something you find interesting, retweet it.
    • “Like” us. Check out our Facebook page and “Like” us to join our online community. Say “hi” or post a photo while you’re there.
    • Update your status. Let your friends on Facebook know about the Center for Fetal Diagnosis and Treatment by directing them to our Facebook page or website, or by sharing one of our recent posts.
    • Share our videos. Subscribe to our YouTube channel and check out our videos. You can “Like,” share on other social networks or comment on a video that strikes you.
    • Blog about your experiences with a birth defect and your life afterward. You are a source of inspiration and information to others. Sharing your story can help those going through a similar experience get an idea of the challenges that might await them, give them the courage to know they’ll make it through, or give them insight into a treatment option they didn’t know was available before. Many of our current and past patient families have started blogs to capture details of their child's journey.
    • Blog about one of our videos. Too often, families receive limited or inaccurate information about their child’s birth defect and treatment options. Sharing one of our educational videos on your blog helps spread accurate information from the world’s most experienced fetal diagnosis and treatment team to other families around the world.

    Additional tips for online advocacy:

    • Tell your story: Personal stories are powerful and can help bring about real change. If you or someone you know has been affected by a birth defect, post about your experience.
    • Keep it short: Facebook status updates (without an attachment or action link) can be no more than 420 characters. Posts with an attachment or action link can contain up to 10,000 characters. Twitter’s max is 140 characters.
    • Keep it simple: Use simple words and short sentences, and avoid jargon and overly technical language.
    • Make a call to action, when possible: Encourage followers to take specific actions. For example: “Write your legislator to show your support for increased research into birth defects.”
    • Share facts: Post facts and statistics about birth defects in general, as well as specific statistics related to the particular birth defect that affected your family.
    • Share news and updates: Post relevant news stories about birth defects, community resources or updates from the CFDT. Encourage your friends and followers to learn more about birth defects and share what they know with their friends.
    • Fuel the discussion: After you post a link, comment on it to explain why it is important and spark a discussion.
    • Don’t just post once: Make CFDT news and information about birth defects a consistent part of your online presence.

Reviewed on April 30, 2014