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5 Reasons to Join Our MDA Advocacy Focus Groups

MDA Advocacy offers many ways to get involved in the advocacy process. Our primary goal is to empower people living with neuromuscular disease to live, work, and play while leading the life they want.


MDA prioritizes listening to the neuromuscular disease community, which helps craft our advocacy agenda. We’re excited to announce a new way to capture your voice: MDA Advocacy Focus Groups.


Participating in a focus group is just one more way that you can help MDA Advocacy work to best support you and the causes that you care about! Your voice and experiences are incredibly valuable to us, and you can help us continue to improve and bolster our advocacy program. We want to hear what we do well, and what we can do better.


Five great reasons you should join an MDA Advocacy focus group


1. Empowerment 

Community-driven focus groups, just like the ones MDA is hosting, bring together individuals who share a common passion, concern, or cause. There is strength in numbers! This is an opportunity to band together and draw support from others.


2. Representation 

Focus groups provide a platform for all voices and perspectives to be heard and acknowledged, including those who might not usually get a chance to speak up. We can do our best work when it is informed by the lived experiences of our MDA community. Whether you are impacted by neuromuscular disease or love someone who is, we want to know what you think about our advocacy work. 


3. Shaping policies and practices 

A focus group bridges the gap between you as advocates and the decision-makers, such as lawmakers and other officials. MDA can share your insights, experiences, and suggestions with decision-makers, better informing them about inclusive, equitable, and real-world needs for the MDA community. 


4. Collaboration 

At its core, advocacy is a collection of voices and a focus group is a great way to learn from others, share resources, and strategize, therefore growing our community of MDA advocates. 


5. Learn about what is impacting the MDA community 

Embrace the learning opportunity that connecting with fellow members of the MDA community can provide! You might discover some new perspectives or strategies for engaging in advocacy or find a way to solve a challenge. In addition, it provides a built-in way of learning from the experiences of others – you never know what kinds of helpful tidbits you may uncover. The neuromuscular disease community is incredibly diverse and everyone has something valuable to offer. 


Join today


One of the best ways we can incorporate your wishes and goals for advocacy is by creating a safe space where you can share your thoughts with us. Your voice will resonate long after we wrap up these focus group sessions! We expect to use these conversations to inform our advocacy strategies into 2024 and beyond.


We will be hosting these sessions during February 2024, with the possibility of extending them longer if we receive interest from many advocates. After you confirm that you are interested, we will be in touch with more specific dates, times, and questions for the focus groups. You can plan to spend 1-1.5 hours with us in a small group, live virtual meeting on Webex. Ready to join? Sign up today:

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Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.