Federal policymakers are some of the most important allies to have when engaging in advocacy. One of the ways that we can drive change for those living with a neuromuscular disease is by engaging directly with the policymakers who make decisions that shape health care, education, accessibility, and other areas affecting our community. Whether it is meeting directly with elected officials or building relationships with them, read on to learn how we can best utilize the strengths and expertise of policymakers and their legislative staffs. 

Meeting with Policymakers 

Getting face-to-face time with policymakers is incredibly important when highlighting the impact of public policy on the neuromuscular disease community. You have several options to meet with policymakers, including in-person events or virtual events. There are several tips to keep in mind as you start meeting with policymakers: 

• Do your homework! Research the policymaker’s stance on health care and disability issues important to our community, including previous votes or public statements. A record of a policymaker’s votes and/or previous statements can often be found on their official government websites.
• We have previously discussed the importance of sharing your personal stories when meeting with policymakers, who often rely on specific examples of how neuromuscular diseases impact everyday life to make relevant policy decisions. Make sure you are sharing your personal experiences each time you meet with a policymaker! It is important to reiterate often why you are requesting a policymaker’s assistance to solve a problem.
• With so many demands on policymakers’ time, focus on a few key points during your meeting and hone in on what action you are hoping they will take. Remember, meetings with policymakers can be short - five to ten minutes potentially!
• If there is a solution you want the policymaker to support to solve a problem, be ready to explain how it will help solve the issue and how it aligns with the policymaker's priorities. 

Continuing Relationships with Policymakers 

When you meet with others to discuss policies important to the neuromuscular disease community, you can build connections that may last for months and years to come if you keep them strong. You can help ensure that the needs of the neuromuscular disease community are kept out in front – long after an initial meeting with a policymaker. Now that you have had a successful meeting, what do you do next? 

• Make sure to keep up with thank-yous. Thank you notes remind the office that you spoke with them and what you talked about. Plus, everyone appreciates a heartfelt thank you for their time.
• Make sure that you can briefly reiterate the main points that you discussed during your meeting and include them in your thank you note. If those you met with had questions that you could not answer during the meeting, make sure to follow up with the answers they need.
• Policymakers will frequently hold events like town halls and virtual forums to reach their constituents where they are. While each policymaker may have a different schedule of these events, attending allows you to continue building a relationship with your local policymakers and reminds them that you are an advocate on behalf of the neuromuscular disease community.
• You must be proactive and offer to serve as a resource to policymakers and their staff. You are in an excellent position to provide them with information about neuromuscular disease-related issues. If you can develop a working relationship with the official and his or her staff, they will look to you more often and ask for your input as issues come forward. By establishing yourself as a reliable source of information, you are improving your access to the policymaker. Proactively sending them fact sheets or updates on MDA’s agenda are good ways to serve as a resource.
• Keep track of follow-up opportunities. Congratulate them on honors received or elections won, thank them for a positive vote, or on actions taken that are important to the community. 

Importance of Legislative Staff 

On any given day, legislative staff may encounter policy areas across several different issues. Each staff member is often responsible for a broad set of issues, such as health care. The topic of health care may fall to just one staff member or potentially two, for U.S. Senate offices. Committees also have their own dedicated staff members, sometimes referred to as professional staff members (PSMs). No matter which office they work in, legislative staff members are incredibly important – they serve as the eyes and ears of their bosses when meeting with their constituents. They are often referred to as subject matter experts. Building relationships with these staff members is wise and often beneficial. How can you use these staff members to your advantage? 

• Legislative staff are often highly knowledgeable and have direct influence over policy decisions. Be respectful, professional, and recognize their role in the process!
• Staffers often have more availability than policymakers themselves, so regular communication with staff is a wonderful way to keep issues top of mind. Inform them of new research, stories, or developments relevant to neuromuscular diseases.
• Let the policymaker’s staff know they can reach out to you if they need background information or constituent stories. You can also direct them to MDA Advocacy staff for guidance on neuromuscular disease-related issues!

Conclusion 

By making your voice heard and establishing long-term connections, you can help advance policies that will support those living with neuromuscular diseases. Together, we can ensure our stories are heard, challenges are understood, and solutions are prioritized. 

What’s Next 

Digital advocacy has become much more popular with the rise of the Internet and social media platforms. Up next, we will discuss digital advocacy and how to make the most of the online advocacy world.