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. For ways to foster these connections and support your advocacy work, let's read on. 

Attend MDA Events 

Many organizations, including MDA, host events, webinars, and forums where you can meet other advocates. Connections will help you stay informed and motivated, and can lead to collaborative efforts down the road. 

For example, you may want to attend: 

• Summer Camp
• Muscle Walk
• Fill the Boot
• Community Education Programs, like Next Steps Seminars and MDA Engage
• MDA Clinical & Scientific Conference
• Fundraising Galas or Golf Tournaments
• Let’s Play Gaming events
• Engage Symposiums and Webinars 

Join Supportive Coalitions 

Oftentimes, specific neuromuscular diseases will have their own support groups that meet virtually - and sometimes in person - to form a community. Expanding your network of advocates will help you find the support you need. MDA offers several support groups to help you find community and support among other MDA advocates and families. 

Many events are now held virtually, such as webinars and panel discussions. These events will often have interactive Q & A features where you can chat and share with your fellow attendees. Presenters want to hear from their audiences, so share with them when you are given an opportunity to do so! 

Connect with Other Stakeholders 

We know how important it is to connect with your fellow advocates, but there are also benefits to engaging with and expanding your networks beyond fellow advocates. We also know from previous MDA Advocacy Toolkit blogs that the importance of building relationships with elected officials cannot be overstated, but what about others who can make a positive impact on the neuromuscular disease community? These stakeholders might include elected officials, organizations, healthcare professionals, caregivers, media outlets, and beyond. Partnerships go beyond simple networks and require the commitment of a few parties to work fully together to address problems and opportunities. When you partner with others, you gain access to different skills, networks and resources, and you subsequently tend to reach a larger audience. 

For example, Quest Media provides helpful information and tips to the neuromuscular disease community with new content nearly every day. If you are moved by a submitted article or find it helpful, you can reach out to that person. Reach out to those whose written communications you find compelling and inspiring. Chances are that if you want to get to know that person just ask to connect with them virtually or maybe even in person if they are able. 

Mentorship is also an opportunity to build strong relationships with others who are focusing their efforts to support the neuromuscular community. More experienced advocates can help mentor those who are newer to the advocacy world. Often these connections are mutually beneficial. MDA offers a mentorship program to help increase the number of people living with neuromuscular disease in the workforce by connecting youth to mentors who are established in a variety of fields.

If you are able, consider taking the time to volunteer with one of MDA's initiatives. There are many volunteer opportunities throughout the organization and throughout the country. When you work together with your fellow advocates in support of one cause or mission, it is a great way to build stronger rapports with others through shared experiences.   

Social Media 

If used effectively, social media is all about making bonds and forging connections in a shared space. Advocacy is no exception! In today's digital age, social media platforms are a key space for advocates to connect, share ideas, and grow their networks. When used effectively, these platforms can significantly expand your reach, helping you connect with advocates across the country and even around the world. 

Facebook, LinkedIn, and other platforms have numerous groups dedicated to advocacy causes. Joining these groups allows you to stay up-to-date on the latest news and to connect with others who share your passion. 

On platforms like X (formally Twitter) and Instagram, following and interacting with policymakers, other advocates, and organizations like MDA can help you stay connected to the broader conversation. Comment on posts, retweet or share meaningful content, and offer your own insights to build rapport. 

Use your social media profiles to share your personal advocacy journey. Whether it’s attending a town hall meeting, taking part in a rally, or submitting testimony on a key issue, sharing your experiences can inspire others to join your cause. Use relevant hashtags like #MDA or #neuromuscular to help others see your posts. 

Conclusion 

By connecting with other advocates and engaging with stakeholders, you’re not only strengthening your own advocacy efforts but also contributing to the larger movement for change. Each connection is a step toward building a community that’s powerful enough to drive meaningful action, whether it’s raising the SSI asset limits or improving access to care for people with neuromuscular diseases.  

Remember, advocacy is not a solo journey. We are in it together and here to help! 

What’s Next 

In the next MDA Advocacy Toolkit blog, we'll discuss the most common and effective strategies for crafting strong messages in your advocacy work.