In 2024, grassroots advocacy is more powerful than ever, thanks to a wide variety of technology options and the ability to connect with advocates from across the globe or just down the street. In this toolkit, we will delve into the fundamentals of grassroots advocacy and equip you with the tools you need to get involved and make change happen!

Are you ready to join an active grassroots community working for those living with a neuromuscular condition? Let’s get started!

Introduction to Grassroots Advocacy with MDA – 101

• The last time you read an article with a title like this, it may have been a college or high school syllabus. Essentially, that is what MDA will be providing through this toolkit – a guide that builds on itself to become a “course” in all things grassroots advocacy. In keeping with the syllabus theme, we will be breaking these grassroots advocacy toolkit blogs into “101-level” blogs and “201-level” blogs.

Values in Grassroots Advocacy – 102

• We know from the first blog in this series that grassroots advocacy is a powerful tool for enacting change from the ground up. However, it is important to consider your values when you engage in advocacy activities – values are the core beliefs that resonate with individuals and communities, including the neuromuscular disease community. This blog explores how to identify your values and utilize them in grassroots advocacy.

Overview of the Legislative Process and How to Adapt Your Advocacy – 103

• As we have been discussing in our recent blogs, advocacy is not a one-size-fits-all approach. There are different techniques, strategies, tactics, and methods of reaching out to decision-makers to influence them. Advocacy is often a marathon, not a sprint, and requires diligent follow-up throughout the legislative process.

Connecting with Other Advocates – 104

• In the world of advocacy, there is strength in numbers. Connecting with your fellow advocates is one of the best ways to harness this power. Along with fellow advocates, you can share experiences, solutions, and other helpful information that may make your journey with neuromuscular disease smoother and less stressful.

The Power of Messages – 105

• 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 Power of Storytelling – 106

• 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.

Advocacy Research Strategies – 107

• 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.

Engaging with Policymakers and Building Relationships – 108

• 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. 

Maximize Impact with Digital Advocacy – 109

• The world is increasingly connected. The Internet has enabled advocates to connect with each other, whether just down the street or across the country. This means that advocacy can be conducted online through digital platforms. For MDA advocates, digital advocacy is an invaluable tool to amplify our message and push for critical policy changes that affect those living with neuromuscular diseases.

Embracing Diversity & Accessibility in Advocacy – 110

• As advocates for MDA, we share a common goal: to drive meaningful change for those living with neuromuscular diseases or affected by them as a caretaker, loved one, etc. To be the most effective grassroots advocacy program possible, our advocacy work must reflect the diversity of the community we represent. How can we create an inclusive advocacy space for everyone who wishes to be involved?