For those of us advocating on behalf of the neuromuscular disease community, we must consider how to craft messages that provide essential information and resonate with different audiences. In this blog, we will discuss the importance of strong messages and explore how to tailor your messages for various audiences that you may encounter in your advocacy work with MDA. 

The Importance of a Strong Message 

Advocacy is, at its core, about communication. In order to effect change, your messages must convey the information needed to encourage decision makers to act. Two key points: 

• Advocacy and public policy issues can be complex! A well-crafted, simple message that utilizes common-sense language helps make complicated information more understandable and prevents your audience from feeling overwhelmed.
• A strong message is consistent across different platforms and communications. As we noted in previous blogs, consistency builds credibility and trust. 

Tailoring Your Message for Different Audiences 

A one-size-fits-all approach does not work in advocacy. Different audiences have different priorities, and tailoring your message to address these priorities will make your advocacy more effective. 

Lawmakers 

Lawmakers have many different demands on their time. They may deal with dozens of distinct subjects every day. In order to capture the attention of lawmakers, it is important to create a message that is informative, suggests solutions, and is respectful of their time.  

• When communicating with lawmakers, it is important to stick to a single issue. Muddying the waters by highlighting several different items ensures that the lawmaker and their staff will not be able to best prioritize your request.
• Remember, lawmakers rely on personal stories from their constituents to explain how the bill would affect them personally. Make sure that you include specific details from your personal story about how the action you would like the lawmaker to take may positively or negatively affect you - if they don't take the action you want. 
• The importance of highlighting the local or state impact of those living with a neuromuscular disease is critical. Lawmakers most want to hear from their constituents who are living with neuromuscular disease to get a full understanding of what solutions may be possible. If lawmakers know that their constituents are confronting challenges, they are more likely to take action when they can localize the issue.
• Make sure to provide a call to action or solution in your messages to lawmakers. For example, if a lawmaker knows that a person living in their state faces challenges to accessing care for a neuromuscular disease, ask them to support one of MDA’s policy priorities that would help support access to care. 

The Public and Healthcare Providers 

• When you are communicating with fellow members of the public, it is important to keep things as simple as possible and avoid complex medical or policy jargon. For this audience, we need to raise awareness of the challenges facing our community and educate them about how they can engage in advocacy to support the community. Your messages should focus on raising awareness and educating people about neuromuscular diseases and how they can support us through advocacy. 
• As health care providers are involved in ensuring that the neuromuscular disease community receives the best care possible, it is possible to bring them into your advocacy efforts by providing messages that are clear and factual and will explain the outcomes of treatment or where there are gaps in care. Health care providers and other health care professionals are important allies, and it is important to not forget the role they play in being supporters of our advocacy work. 

Components of an Effective Message 

Each time you compose a message, there are pieces that should be included. Think of it as putting together the pieces of a puzzle. Independently they don't seem to connect, but when they are all put together, they paint a picture. 

Subject Line: Start with a direct subject to make the message stand out. 

Introduction & Ask: State your role as a constituent – if writing to a legislator – and a member of the MDA and neuromuscular disease community to establish your connection. Then, clearly state what the thesis of your message is. Are you asking for information from a member of the public? Asking for support from your health care provider? Co-sponsorship of a bill? State your request as briefly and as clearly as you can. 

Problem Statement: & Personal Impact: 

• Briefly explain the current problem, such as the delays families face when trying to access care across state lines.
• Make sure to add details about how you have been personally impacted by the problem you are focusing on. 

Solution: Highlight how the proposed solution addresses the problem. 

Call to Action: Politely ask the message recipient to take action. 

Closing: Thank them for their time and provide your contact information for any follow-up. 

Crafting Effective Messages 

There are a few best practices to employ when building messages that will help ensure your message is effective, no matter who your target audience is: 

• Before crafting your message, consider what your goal is. You should always have a goal in mind as you are creating a message. Are you asking for co-sponsorship of a bill, raising awareness of an upcoming event, or seeking support for a policy change?
• Make sure to use credible data to support your messages.
• Real stories about real people who are impacted by neuromuscular disease are always more impactful than rattling off facts.
• At the end of every message, no matter who your audience is, you should end with a call to action. In one sentence, what action do you want the person receiving the message to take?
• Consider if a visual aid would help make your message more effective. This may not be appropriate for all scenarios, but it is worth consideration.
• Advocates for the neuromuscular disease community know firsthand the struggles that families face and communicating the human aspect of your story is key to connecting with others on a deeper level. Do not be afraid to add emotion into your message but use it to accentuate your point and weave it into your message. Stay on the course! 

Legislative Example

Subject line – Support the Accelerating Kids’ Access to Care Act 

Introduction & Ask – As your constituent and a Muscular Dystrophy Association grassroots advocate, I am writing to urge you to work towards bringing the Accelerating Kids’ Access to Care Act (S. 2372) to the floor of the U.S. Senate for a vote. 

Problem Statement & Personal Impact – When children living with neuromuscular diseases cross state lines to seek specialized medical care, the providers offering this care must continually reenroll in out-of-state Medicaid programs. This process slows access to high-quality medical care, but also places a burden on families who are already facing significant challenges and allowing their diseases to irreversibly progress. My family has had to travel out of state for the last three years to obtain care for my child's neuromuscular disease, leading to lost time, money, and experiences with my child. 

Solution – The Accelerating Kids’ Access to Care Act, introduced by Senators Michael Bennet (D-CO) and Chuck Grassley (R-IA), would streamline the Medicaid enrollment process and allow out-of-state care providers to stay enrolled in state Medicaid programs for five years, which reduces burdens for families and health care providers. 

Call to Action – Please support the Accelerating Kids’ Access to Care Act today. 

Closing – Please contact me at advocacy@mdausa.org if you have any questions or if I can provide any additional information. I look forward to hearing from you. Sincerely, YOUR NAME 

Conclusion 

In the world of advocacy, strong messages ensure that we can share the most vitally important information with those interested in learning more about the neuromuscular disease community and how they can support our advocacy. It's important to remember that everyone who receives a message about advocacy has a role to play in its process. 

What’s Next 

Up next, we are going to discuss storytelling and what makes a good story when communicating with lawmakers or other decision makers who you are seeking to persuade.