There’s nothing more powerful when people living with neuromuscular disease share their stories with lawmakers. And when that happens, lawmakers listen. Stories enable those decision makers to focus on priorities and policies that will change the lives of those they serve – whether that may be constituents, their patients, or another group of community stakeholders, such as caregivers. For the neuromuscular disease community, where individual experiences are often quite different from others,’ harnessing the power of stories can help get many key advocacy and public policy priorities across the finish line. Today, we will discuss effective storytelling and how to apply your storytelling work to advocacy. 

Connecting Through Stories

Stories have been part of our culture since the beginning of time. Stories move us emotionally and motivate us to act. While statistics and research are vital in highlighting issues, they can often feel impersonal without a glimpse into someone’s daily life who is living with a neuromuscular disease. Personal stories help us put a name to the “face” of the issue. When advocates share their experiences, whether it’s navigating healthcare systems, facing discrimination, or celebrating small victories, they invite others to empathize, connect, and take action. What makes an impactful story? 

• A story that paints a picture
• A story that engages our emotions
• A story that motivate us to act
• A story that is short and sweet

Raising Awareness 

As one of our greatest challenges in advocacy is conveying information and swaying those who have decision-making power, storytelling is also an incredibly effective way to raise awareness about challenges and opportunities facing the neuromuscular disease community. Think of it as building the foundation for advocacy; storytelling is one piece of the foundation to eventually build a successful achievement when you provide clear, helpful information to your audiences. Decision makers feel more empowered to act on something when they understand it. 

Empowering Others 

When advocates share their stories, they empower others in the community to do the same. This collective sharing fosters a sense of belonging and encourages individuals to speak out about their experiences. Being able to build an empowered community that shares their stories is invaluable to advocacy work. 

 Influencing Policy Change 

Lawmakers need as much information as possible when making policy decisions that impact members of the neuromuscular disease community. Policymakers are often swayed by personal stories that illustrate the impact of legislation (or the lack thereof) on individuals’ lives. The goal is to convince lawmakers that real lives are affected every day and that they have the power to improve others' lives. 

Lasting Impact 

A good story will leave your audience thinking about it long after you have told it. When we tell a story, we hope it will persuade others to act to support our causes and interests. Stories can often help bring new advocates into the fold and inspire others to contribute to conversations. Stories “cut through the noise.” 

How to Use Storytelling in Your Advocacy Efforts 

• Consider what you want to convey. Is it a particular challenge you faced, a triumph you achieved? You’re the expert about your story.

• Introduce yourself and your connection to the neuromuscular disease community.

• Share your genuine experiences as a member of the neuromuscular disease community. Can you connect it to broader themes?

• Share your story through various mediums, such as written articles, videos, social media posts, or public speaking engagements. Different platforms can reach diverse audiences! MDA can offer you support in this. Just ask!

• Serve as encouragement to others who are interested in sharing their stories. Make sure to express that confidentiality is taken seriously if requested by a fellow advocate. This helps to foster a sense of trust in the community.

• As an advocate, what is important to you about your story? What is your motivation? If you include a call to action, what is the call to action?

Conclusion 

We know storytelling is a powerful tool in our arsenal that can help sway people to support the neuromuscular disease community. Sharing our stories helps us realize that we aren't alone, and that we can find support among our fellow advocates to empower each other in support of common goals. Stories from MDA’s Hill Day are just one example of how stories make a big impact!

What’s Next 

We will talk about how to conduct research for your advocacy efforts, and how to leverage data to support your advocacy work.