If you or a loved one is living with spinal muscular atrophy (SMA), you’re already aware of the impact that the condition can have on your life — but chances are strong that other people in your orbit don’t know as much as they could about the disease. That’s why the nonprofit Cure SMA honors SMA Awareness Month and why mySMAteam gets behind it every August.

During this period, you can help raise awareness by sharing your experience with SMA — but it doesn’t have to stop there. You can get involved in boosting awareness of the condition throughout the year.

Raising awareness doesn’t just help other people understand your condition. Many mySMAteam members have found that building more comprehensive knowledge about the condition helps them make more informed decisions around treatments and strengthens their feelings of self-reliance.

If you’d like to get involved in increasing awareness about SMA, consider taking a few important steps.

Start By Raising Your Own Awareness

Before you can share information about SMA with others, it’s a good idea to understand the specifics about SMA, including the causes, signs and symptoms, and treatments for the condition.

Spinal muscular atrophy is an inherited neuromuscular disorder that causes muscle weakness and degeneration over time. There are five main types of SMA that account for 95 percent of cases: types 0, 1, 2, 3, and 4. Type 0 is the most severe form of SMA and begins before birth. Type 4 is the mildest and begins in adulthood. Depending on the type of SMA a person has, symptoms can include:

• Respiratory weakness
• Problems swallowing and chewing
• Lack of motor function
• Inability to walk
• Mild muscle weakness

SMA is a rare disease. It occurs in about 1 out of every 11,000 births in the United States. About 1 in 54 people in the U.S. is a carrier for SMA, though this rate varies by ethnic background. Although SMA impacts a small number of people, it is the top genetic cause of infant mortality.

If you are newly diagnosed with SMA, educate yourself as much as possible about the condition by talking to your health care provider and networking with other people whose lives have also been affected by the condition.

Share Awareness Resources

Once you’re armed with information about SMA, you can share it with others. The fastest and least expensive way to do this is via social media. You can post information about SMA, share details about the condition, and join communities of other people who are also working to raise awareness about SMA.

To ensure that your message reaches as many people as possible, consider using an appropriate SMA-related hashtag. For instance, Cure SMA often uses the hashtags #CureSMA and #SMAAwarenessMonth on its official Twitter account. By using popular hashtags like these, your posts will be seen by more people who have the same interests as you do, and they’re likely to share and comment.

This helps raise awareness for the condition, and it also allows other people with SMA to realize they aren’t alone.

Participate in Awareness Activities

Another way to raise awareness about SMA is to participate in an activity dedicated to the cause. You can participate in a candle-lighting event, add your photo to Cure SMA’s SMA Awareness Month Community Album, or participate in another event that’s important to you. You can help other people understand more about SMA while having fun and raising money for the cause.

If you have money to spare, consider donating to organizations such as Cure SMA, which allows for further research into finding ways to better treat and manage the condition.

Connect With Others Who Understand

On mySMAteam, more than 1,100 people in the SMA community come together to ask questions, give advice, and share their stories with others who understand life with the condition.

Share your SMA journey in the comments below, or start a conversation by posting on your Activities page.

Resources

1. SMA Awareness Month — Cure SMA
2. Spinal Muscular Atrophy — Orphanet Journal of Rare Diseases
3. Spinal Muscular Atrophy — A Timely Review — JAMA Neurology
4. Spinal Muscular Atrophy — MedlinePlus
5. Pan-Ethnic Carrier Screening and Prenatal Diagnosis for Spinal Muscular Atrophy: Clinical Laboratory Analysis of >72,400 Specimens — European Journal of Human Genetics
6. Spinal Muscular Atrophy: Huge Steps — Dana Foundation
7. About SMA: Organizations Worldwide — SMA Foundation