If you or your child lives with Duchenne muscular dystrophy (DMD), you know how much it affects daily life. However, many people around you may not know much about the condition or its impact. That’s why raising awareness about DMD can be so important — and rewarding.

September is an ideal time to get involved, as it’s Duchenne Action Month, with World Duchenne Awareness Day on September 7. There are many events to participate in all month long, both in person and online.

But you don’t need to limit your efforts to raise awareness of Duchenne muscular dystrophy to just one month. There are ways to raise awareness, educate others, fundraise, and advocate for changes in policy on rare diseases all year long. Here are some ways you can get involved.

1. Understand Duchenne Muscular Dystrophy

The first step in raising awareness about Duchenne muscular dystrophy is to learn more about the condition yourself. For example, many people don’t know that DMD affects 1 in every 3,500 male babies born worldwide, according to the National Organization for Rare Disorders (NORD). The more you know, the better you can educate others.

Start with the CureDuchenne Resource Library or search online for reliable information. If you have unanswered questions, make a list of them and ask your doctor. They can provide answers or point you to helpful resources.

2. Tell Others in Your Network About Duchenne Muscular Dystrophy

Once you’re comfortable with your knowledge of Duchenne muscular dystrophy, start talking to others about it. Raising awareness can be as simple as having honest conversations with friends, family, and co-workers. Share what Duchenne is, what it’s like to care for someone with DMD, and how the condition progresses over time.

Most people won’t know about DMD unless they are directly affected by the condition. Sharing information helps them understand the condition better and learn how to support you and your family. It’s also important for people to know that their friends and neighbors may live with conditions like Duchenne. This awareness reminds us all to be kind and thoughtful toward others.

3. Share About Duchenne Muscular Dystrophy on Social Media

Social media is a powerful tool for raising awareness about Duchenne muscular dystrophy. It allows you to reach friends, family, and even a broader audience. Consider changing your profile picture on social media or sharing posts about life with DMD.

Parent Project Muscular Dystrophy offers a social media toolkit to help you get started. If people ask questions, you can answer them as you feel comfortable. If your post goes viral on social media, be prepared for local news outlets or others to reach out to you for more information.

4. Ask for Formal Recognition of Duchenne Muscular Dystrophy

Many public buildings are lit in colors representing different causes. You can write to your state and local officials asking them to light public buildings red on September 7 for World Duchenne Awareness Day. Research the official channels for making these requests.

You can also ask state and local governments to issue a proclamation declaring September 7 as World Duchenne Day in your community. Providing a template makes it easier for busy officials to participate in recognizing DMD.

5. Fundraise for Duchenne Muscular Dystrophy

There are many ways to raise money for Duchenne muscular dystrophy and muscular dystrophy in general. The Muscular Dystrophy Association runs campaigns like the Shamrock Campaign every March. The organization also has holiday fundraisers, summer camp initiatives, and events like the MDA Muscle Walk, golf tournaments, galas, and a hop-a-thon for kids.

You can join one of these events or plan your own fundraiser. With enough planning, you might even invite a famous person with Duchenne muscular dystrophy to participate.

6. Buy Duchenne Muscular Dystrophy Merchandise

Many organizations dedicated to muscular dystrophy and Duchenne muscular dystrophy sell merchandise. You can find shirts, hats, wristbands, vests, bags, and more. Purchasing these items supports DMD research and awareness.

Wear your merchandise and share photos on social media to help raise awareness about Duchenne muscular dystrophy.

7. Donate Directly to Duchenne Muscular Dystrophy Groups

One of the simplest ways to support Duchenne muscular dystrophy awareness is by donating to organizations working on this cause. If you or your loved one prefers not to participate directly, your donation can still make a difference.

Most groups accept one-time or recurring donations. Choose an organization you want to support and contribute to their DMD efforts.

8. Join a Duchenne Muscular Dystrophy Clinical Trial

Clinical trials for DMD allow researchers to test new medications and treatments. While clinical trials come with benefits and risks, they have helped improve life expectancy for people with DMD.

If you’d like to participate in a clinical trial, talk to your healthcare provider. They can help you find trials that you might qualify for and connect you with researchers that can answer your questions.

9. Fight for Policy Changes

Raising awareness for Duchenne muscular dystrophy often involves advocating for policy changes. This could include:

• Increasing funding for Duchenne muscular dystrophy research
• Requiring insurance providers to cover DMD treatments
• Ensuring all newborns are screened for DMD
• Supporting paid leave for parents caring for children with DMD.

If you have the time and energy, consider attending the annual Advocacy Conference hosted by Parent Project Muscular Dystrophy. You can also work locally by getting to know state and local officials. They have the power to advocate for local laws that directly impact people living with Duchenne muscular dystrophy.

Find Your Team

On myMDteam, the site for people with muscular dystrophy and their loved ones, members come together to gain a new understanding of MD and share their stories with others who understand life with MD.

Are you involved in raising awareness for Duchenne muscular dystrophy? What is your favorite way to do that? Share your experiences in the comments below or by posting to your Activities page.