Home / Get Involved / Advocate / How to Share Your Story

How to Tell Your Story

Your voice matters—and it is powerful. Your story inspires and motivates legislators, policymakers, thought leaders, and community members to take action for adults with congenital heart disease.

People become more invested when they understand how CHD affects you or someone they love. Whether you have a CHD yourself, provide care to people with CHDs, or are a parent, spouse, sibling, family member, or friend, help others understand how your experience informs your sense of urgency.

On this page, we’ll share the basics of how, when, and where to share your story so you have the greatest impact. One section focuses on how to best communicate with your elected officials.

How to Share Your Story – Your ACHD Elevator Speech

No matter the audience, you will want to be able to share your ACHD story quickly and concisely in what is often called an “elevator speech” or “elevator pitch.” This method allows you to communicate your authority as a patient advocate, provide key facts about CHD, propose a solution, and empower your listener with a practical way to act on what they have heard—all within about a minute, the amount of time you might spend on an elevator.

You most likely will have several elevator speeches, depending on what you are advocating for. In general, elevator speeches have five key parts:

  1. Introduce yourself. Give your name and where you live or work. If you’re talking to your elected representative, make sure to note you live in their district.
  2. Explain your problem or challenge. As an adult with CHD, here is where you can introduce how you are personally affected. Let’s say you are advocating for funding to expand the ACHD workforce. You could say, “I have congenital heart disease. I always believed I had been cured by childhood surgery, and I was very healthy, even running every day. After I turned 30, I suddenly started getting chest pains, shortness of breath, and fatigue. I was told I urgently needed to see an ACHD specialist, but I couldn’t find one within 300 miles of my home.” If you can, include a fact or statistic that speaks to your personal experience; we offer a list of key facts on our FAQ page.
  3. Propose a solution to your problem or challenge. Your solution is where you spend most of your time. Here, you explain what you believe should be done and how your solution will address the problem. Keeping with our ACHD workforce example, you could explain that more funding to better understand and address why it’s so hard to find an ACHD specialist in the area where you live would have allowed you to more quickly access care.
  4. Make your ask. Ask your listener to be part of the solution. “Will you support me and others with ACHD by publicly supporting the Congenital Heart Futures Act of 2024, which will specifically address the workforce shortage that prevents me from getting the care I needed?” This ask can be adjusted depending on your audience. If you’re talking with another person with ACHD, for example, you could ask them to send a letter or go to ACHA’s website to learn more.

Before delivering your elevator speech, take time at home to craft it for advocacy purposes. Write it down, or even record yourself delivering it so you can time yourself. Try different messages for different audiences and test them out with friends or family. A few other tips:

  • Keep it simple. Most people won’t know much about adult congenital heart disease. Ask: Am I using medical jargon they won’t understand?
  • Use statistics sparingly. Facts are most useful when they illustrate the wider scope of an issue that has impacted you personally.
  • Be ready for questions. What more does your listener need to know to provide support? Do you have information or resources you can leave behind?
  • Have patience. You might not immediately get to yes! Listen to what the person has to say, politely answer questions, and persist in your follow up. Be accurate and transparent.

How providers use elevator pitches
How to use elevator pitches with a health care professional

Where and When to Share Your Story

There are many places you can share your story, but you need to tailor the length and focus of what you share based on the location. Here are several suggestions for places to share your ACHD story.

In your community. Be creative about where you have influence. Your community might include your job, your spiritual home, health facilities, and businesses you frequent. Look for opportunities to share your story to educate people who know you but might not know what you or your family has experienced in coping with ACHD.

Social media. Facebook, X, Instagram, TikTok, and LinkedIn are just a few social media platforms you can use to connect with others with ACHD or who can influence legislation or policies that impact people with ACHD. Choose your platform based on the way you prefer to communicate (in writing, with video/audio, etc.). Most posts get greater engagement when you include imagery or a short video.

News media. Email or call local reporters, particularly ahead of times they’ll be looking for community stories about heart disease, like National Heart Month (February) and CHD Awareness Week (Feb. 7-14). Get to know content creators in your community who cover physical and mental health issues, insurance concerns, and health policy, and let them know you care about ACHD.

Blogs and Social influencers. Write your story as a blog to post on your own, another person’s, or ACHA’s website. Reach out to influencers who talk about ACHD or heart health to see whether they will share your story on their social platforms.

With elected officials. Let your federal, state, and local officials know why ACHD is important to you, especially at times when they are considering legislation that impacts people with CHD, people with disabilities and neurocognitive challenges, and financial impacts of chronic health conditions.

How to Reach Your Legislators

At ACHA we work tirelessly to educate our elected officials about adult congenital heart disease. We make periodic trips to Capitol Hill and have ongoing dialogues through in-district and virtual visits. Reach out to advocacy@achaheart.org to express interest and learn more about these specific activities. Here are some suggestions we’ve learned over the years to communicate with legislators:

  • Find out who you need to reach. Use a search engine to find out who represents you at the federal, state, and local levels. Call their office to let them know that you’re a constituent and that you hope the legislator supports the Adult Congenital Heart Association’s priorities.
  • Reach out via email. Today, email is usually the quickest and most effective way to reach legislators. Snail mail is also possible, and you can send a personal letter, photos, or handwritten cards. But know all mail goes through a strict security screening process, so mail takes a long time to reach your legislator. Use ACHA’s convenient, pre-drafted letters to get started!
  • Have an in-person meeting. Because legislators receive many requests for in-person meetings, if you want to meet them on Capitol Hill or in your state capitol, reach out to see whether you can be involved in an ACHA Advocacy Day. Another effective strategy is setting up in-district visits when your legislator is at home.
  • Be prepared. You’ll likely have no more than 20 minutes, so practice ahead of time. Expect to meet with a legislative assistant or aide, and plan time for listening and answering questions. Dress neatly and wear comfy shoes. If you’re with a group, choose a spokesperson to open and close the visit, and assign someone to take notes. Leave behind your contact information and helpful materials like ACHA’s Adult Congenital Heart Fact Sheet or a fact sheet about the legislation under discussion.
  • Send a thank you note and let ACHA know how you did. Do these together! We encourage you to do your thank-you note via email, and then fill out our Feedback Form to let us know how everything went.
  • Respond to ACHA’s Action Alerts. When ACHA is aware of the urgent need to take action, we’ll let you know through our Action Alerts. To get on our list for alerts, join our email list by contacting us.