We have covered the importance of sharing your story in advocacy, but how do you back it up with concrete details, facts, and numbers to help make your messaging and advocacy the most compelling it can be? This toolkit blog will help you find and weave in key data to support your advocacy to help make it more robust. Read on for more ways to dive into research to support your MDA advocacy work. 

Reliable Sources 

 It is important to understand where you can find data that will help you create a strong and compelling message. Where can you find this information? There are a variety of places where you can obtain it: 

•  Start with MDA Advocacy first! MDA maintains our Action Center, which provides helpful advocacy tools, updates, our current legislative asks, and ways that you can reach out to your members of Congress.
• MDA’s Quest Media also provides regular news and updates from members of the neuromuscular disease community spanning advocacy, guest blogs, reviews, lifestyle, commentary, and much more. 
• Our MDA.org website is home to extensive information about neuromuscular diseases to get you the information you need. 
• Government agencies are also a reliable source of information. You can visit the following websites as a start, but this is certainly not an exhaustive list: 
  • Centers for Disease Control and Prevention (CDC): For data on health care trends, including neuromuscular diseases.
  • National Institutes of Health (NIH): Includes research studies, funding opportunities, and information on clinical trials for neuromuscular diseases.
  • U.S. Department of Transportation (DOT): Includes information on air travel rules, regulations, and rights.
  • Social Security Administration (SSA): Visit SSA.gov for information on how federal benefits programs like Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are structured, and how changes impact those living with a neuromuscular disease.
• Nonprofits like MDA also maintain sources of information that you can draw from. For example, the National Disability Rights Network (NDRN) regularly produces fact sheets and information for folks living with a disability.
• News websites, such as STAT News, NPR’s Health section, or Reuters Health may also cover breaking news and updates in the medical community, including neuromuscular diseases. 

Bills 

As an advocate, it is critical to stay updated on current legislation and policy changes. There are two primary ways that you can stay up to date on legislation that MDA is advocating for: 

Sign up for alerts through MDA’s Action Center. When you sign up to receive our advocacy alerts, you will be notified of all of MDA’s current policy and advocacy initiatives, which include explanations of the importance to the neuromuscular disease community. We also include other helpful advocacy tools on the website. 

Congress.gov is the official website for federal legislative information. On Congress.gov, you can search for legislation relevant to the neuromuscular disease community – including the full bill text, cosponsors, voting records, and more. 

Weaving in Facts and Figures 

Data and personal stories are a powerful and essential combination in advocacy. When you utilize both, you help solidify your request and add compelling figures to support it. A few more items to remember:

• Personal stories grab attention, but data grounds your story. As we have talked about in previous toolkit blogs, stories are incredibly important, and they form the foundation of an ask. However, data is the bricks that help form a steady structure. You should be able to cite data that supports the action you want the lawmaker to take. 
• For example, if you are impacted by outdated SSI asset limits, share your experience, and note that the asset limits have not been changed in nearly 40 years while the cost of living continues to grow.
• Consider the audience you are speaking to and tailor your data accordingly. For example, certain lawmakers may look for more economic data to justify a viewpoint, whereas others are more focused on the impact of health care and potential issues in coverage.
• One of the most important things when you are speaking with lawmakers is to point out to them exactly how a bill would benefit or harm their constituents, or what a lack of action would do to negatively impact their constituents. Try to utilize data that is as specific and applicable as possible to those in the lawmaker's state or congressional district.
• If you are presenting many numbers or figures, think about whether it makes sense to use a chart or a fact sheet to break down complex information into more user-friendly terms.
• If you use data in your conversations, make sure that you can explain and cite where you got your information from and that your information is accurate and current. 

Conclusion 

The importance of data in advocacy cannot be understated. To have an effective message, you must be able to wrap your personal story with compelling data points to paint a full picture for the decision-maker you are communicating with. 

 Advocacy is a marathon, not a sprint. However, solid research can help build the foundation of real, measurable change for the neuromuscular disease community. 

What's Next 

Building relationships with policymakers is key to driving change for the neuromuscular disease community! Next, we will discuss the essentials – how to prepare for a meeting, building lasting connections with legislative staff, and more.