Why Advocacy Is Important to the SMA Community

For families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving lives. Advocating for SMA has a ripple effect. It can lead to inspiring change for so many. Here is why advocating for SMA matters and how you can get involved.

Why advocate for SMA?

Advocacy for SMA is crucial. It helps:

• Bring awareness to the condition
• Support SMA research efforts
• Influence policy changes that can lead to better treatments and resources

SMA is a rare disease, which means it often does not receive as much attention as more common conditions. Advocating for SMA helps ensure that this condition gets the focus it deserves. This has the potential to lead to more funding for research, better support services, and improved quality of life for those affected.

Issues that matter to the SMA community

Issues that people are advocating for in the SMA community include:

• Healthcare
• Housing
• Transportation
• Disability rights
• Employee and financial security
• Technology
• Screening and genetic testing
• Accessibility of public places and commercial establishments

Several SpinalMusclarAtrophy.net’s Health Leaders are spearheading advocacy efforts across the nation. Here are a few of their inspiring stories:

• Using Your Disability to Impact Lives by Megan DeJarnett
• Mixing Advocacy With Travel in Washington D.C. by Allie Williams
• Getting Tips and Support at the 2023 Cure SMA Conference by Kellie Cusack

Benefits of SMA advocacy

There are so many benefits to advocating for SMA. Not only can you help raise awareness about a rare condition, but you also can find a sense of purpose for yourself.¹

Building and finding a community

One of the biggest benefits of advocacy is connecting with others who understand what you are going through. Through advocacy efforts, you can meet fellow SMA families, share experiences, and build a supportive network. This community can offer emotional support, practical advice, and a sense of belonging.

Helping others

Advocacy can lead to tangible changes that benefit others in the SMA community. By speaking out, participating in fundraisers, or supporting research, you contribute to efforts that can improve treatments and resources for those affected by SMA.

Recognition and accomplishing goals

Advocacy is not only about helping others but also about achieving personal goals. Whether you are raising awareness, influencing policy, or organizing events, advocacy provides opportunities to make a real impact. These things can be deeply rewarding and provide a sense of purpose.

How to prepare for advocacy

Before diving into advocacy, do your best to prepare. Start by educating yourself about SMA and current research. Connect with SMA organizations and join support groups to learn about ongoing initiatives and find out where your efforts can make the most difference.

Consider setting specific goals for your advocacy work. Whether it is raising awareness, organizing a fundraiser, or pushing for legislative changes, try to set clear objectives.

Consider the Social Health Network’s Patient Leader Certification Program

This one-of-a-kind online program was created for Health Leaders to help make their mark in the healthcare space. It can help you:

• Sharpen your message
• Extend your reach
• Avoid pitfalls
• Own your voice
• Discover your path

See how you can benefit from it.

Keep health literacy in mind

Health literacy involves understanding health terms and concepts. But it is also about being able to:²

1. Navigate the healthcare system
2. Interpret research
3. Advocate for resources or treatments

By improving your health literacy, you become a more informed advocate. You are able to engage with health experts, policymakers, and the community in a more meaningful way.²

Read Raquel’s personal experience of how health literacy changed the way she advocates:
How Learning About Health Literacy Changed the Way I Advocate for Myself and Others, by Raquel Dozier

Carve out your niche

Carving out a niche for yourself is a great way to make a difference in the advocacy space. Specializing in 1 area allows you to develop expertise, build a strong network, and become more recognizable.

You could focus your advocacy on:

• Fundraising
• Policy change
• Research support
• Community outreach

Read how Cynthia carved out a niche for herself:
How I Carved Out My Niche in the World of Chronic Illness Advocacy, by Cynthia Covert

Avoiding burnout

Advocacy can be very fulfilling. But it can also be exhausting. To avoid burnout, take care of yourself and set boundaries. Break your advocacy tasks into smaller steps, and ask for help from others in the community.¹

Make sure to balance your advocacy work with time for self-care and relaxation. Remember, taking care of yourself helps you stay energized and effective in your advocacy efforts.

Read more tips on avoiding burnout here:

• How to Avoid Advocacy Fatigue
• Preventing Health Leader Advocacy Burnout

How to get involved

Getting involved in SMA advocacy is easier than you might think. Here are some steps to get started:

• Join SMA organizations – Many organizations focus on SMA awareness, research, and support. Joining these groups can provide resources, information, and opportunities to get involved.
• Participate in events – Attend events such as fundraisers, awareness campaigns, or community meetings. These events are excellent ways to meet others, spread the word about SMA, and support research initiatives. And if you feel ready, consider organizing your own fundraising event!
• Use social media – Social media is a powerful tool for advocacy. Share information, connect with other SMA families, and participate in online campaigns to raise awareness and support.
• Contact policymakers – Reach out to your local representatives to discuss SMA issues. Advocate for policies that support research and better care. Your voice can help shape policies that improve lives.
• Volunteer – SMA organizations need volunteers for various tasks, from event planning to administrative support. Volunteering is a great way to meet new people and expand your advocacy network!

Advocacy is a vital part of the SMA community. You can make a big impact in the fight against SMA.

Here are some more articles that can help you get started on your advocacy journey:

How to Become a Patient Advocate: Tips for Taking the Plunge
Understanding Health Leadership
Community Awareness and Education