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. Here are some tips to maximize your impact, build awareness, and influence decision makers — all from the comfort of your home.
Know Your Platforms
Each social media platform serves a different purpose, so think strategically about where to share your message. Each one has its own benefits and drawbacks:
- X (formally known as Twitter) is great for quick updates, tagging lawmakers, and following hashtags related to neuromuscular disease legislation and/or current issues in the community. Reply to and engage with others’ posts to build conversation on X. Respond to posts from policymakers or tag them in your posts about neuromuscular disease-related subjects. Tag your friends and followers on X to encourage them to share neuromuscular-related stories and amplify your content to their followers. Link to press releases, photos or other information to provide more information and context to your X posts.
- Facebook allows for more in-depth posts and has a strong community feel; it’s perfect for sharing your story with family, friends, and local allies.
- Instagram and TikTok thrive on visuals – consider sharing videos or images that highlight a personal story, your advocacy work, or MDA event. Be descriptive in your Instagram and TikTok captions and have fun with them.
- LinkedIn is an excellent space for reaching professional networks and public policy influencers, allowing you to share advocacy victories, resources, and invitations to join MDA Advocacy’s ongoing initiatives. MDA is very active on LinkedIn, so there are many opportunities to reshare content from MDA on LinkedIn and continue connecting with others.
Don’t worry about being everywhere on social media; focus on where you can be most impactful.
Make It Personal
As we have discussed, one of the most compelling aspects of advocacy is the personal connection it fosters. When sharing online, weave in your unique story, or the story of a loved one with neuromuscular disease, to humanize policy issues. Explain why a specific policy matters to you and your family, how it impacts your daily life or could improve it, and describe what changes would bring positive benefits. Personal stories resonate deeply with audiences and can motivate policymakers and fellow advocates to take action and get engaged.
- Let your messages reflect your personality, and use humor where it is appropriate. The goal should be to become a credible source of information.
- A note of caution: refrain from posting personal attacks or negative comments about anyone. Straying away from your core message and facts will cause the community to lose trust in you and diminish the attention your social media presence receives from your followers. Never assume that policymakers and media members will not see what you post on social media! The ease of sharing information also ensures that others can see them and react to them, even if they weren’t your initial audience.
Engage with Policymakers
Policymakers are typically active on social media, making it easier to connect directly with them. They can be reached on social media in a few ways:
- Tag policymakers in your posts to bring issues to their attention. For example, @SenatorDoe, support the Accelerating Kids’ Access to Care Act (#AKAC) to help improve access to care for children living with #neuromuscular diseases!
- Thank them publicly for their support on relevant bills. A simple “thank you” tweet can strengthen relationships and show appreciation. It goes a long way!
- Use hashtags relevant to MDA and the neuromuscular community’s advocacy work, such as #MDA, #neuromuscular, and #RareDisease. Hashtags help connect advocates and share information.
Participate in MDA’s Advocacy Alerts
MDA sends out advocacy alerts for timely legislative action and hosts virtual events, such as MDA Advocacy Institutes, to keep advocates informed about upcoming legislation and advocacy actions. These alerts are carefully timed for maximum impact – right when your email or call could make the difference.
Boost Awareness with Visuals and Infographics
Data shows that posts with images get significantly more engagement than text-only posts. If you’re advocating for an MDA community priority, such as a bill, consider using eye-catching graphics that illustrate key points. MDA often provides shareable infographics on our social media channels – feel free to repost and share these!
If you're comfortable creating your own content, infographics that explain complex legislation in a straightforward way can be particularly effective. Simple apps like Canva can help you design visuals even without a graphic design background.
Stay Consistent and Follow Up
Building relationships with policymakers takes time, and change doesn’t happen overnight. Stay consistent with your messaging—regularly post updates, share new data, and continue tagging lawmakers to remind them of your cause. If you’ve connected an official’s office, follow up periodically to see if you can provide additional resources, data, or stories. Consistency builds credibility and trust, showing you’re invested in the long-term effort.
Leverage MDA’s Resources
MDA provides digital toolkits, fact sheets, talking points, and other resources to make advocacy easier on our website. Use these to strengthen your posts, share accurate information, and feel confident in the facts you’re presenting.
MDA’s Quest Media is a repository of information to assist those living with neuromuscular disease. It provides resources, news, and stories – including a variety of content designed to educate and find support among others in the community.
Conclusion
By harnessing the power of modern digital advocacy, you can raise awareness of issues that affect the neuromuscular community in your local community, state, across the country, and even globally. Plus, you can motivate others to act by engaging in digital advocacy work to keep potential advocates up to date. Your reach is endless!
Up Next
For the final MDA Advocacy Toolkit blog of 2024, we will discuss embracing diversity, inclusivity, and accessibility in advocacy. In addition, we’ll cover some ways to incorporate these ideas into your advocacy work.