The Spinal Muscular Atrophy (SMA) community comes together in August every year. This month is dedicated to spreading awareness of SMA, a rare neuromuscular disorder. It also highlights the challenges faced by those with SMA while celebrating the progress in research and treatment. Below is information on why SMA Awareness Month is so important and how you can be a part of it. 

What Is Spinal Muscular Atrophy? 

Spinal muscular atrophy (SMA) is a genetic condition that impacts the spinal cord motor nerve cells, leading to progressive weakness and muscle wasting. The severity of SMA varies, with mild symptoms like muscle weakness and severe mobility and respiratory problems. The disorder is linked to mutations in the SMN1 gene, which is crucial for producing a protein used for motor neuron survival. 

The Importance of Awareness 

There are several reasons to consider raising awareness about SMA. The first is to improve early diagnosis. Awareness leads to early diagnosis and detection, which is essential for quick intervention and management of the condition. 

In addition, awareness helps promote research and funding. These campaigns create funding for research. This is one of the best ways to find a cure and develop new treatments. 

Beyond that, awareness activities are useful to support patients and their families. These activities around awareness provide information and support to families and patients. This can make navigating how to live with SMA a bit easier. 

Getting Involved 

There are many ways to get involved in SMA Awareness Month and help support the cause. For instance, you can use your social media accounts to share information about SMA. Consider using SMA Awareness Month frames for your profile pictures or sharing educational graphics to inform your friends and family. 

Another great option is to organize or participate in fundraising events. Bake sales, virtual challenges, and the Cure SMA Walk-n-Roll are great options. These events are an excellent way to raise funds but can also bring the community together. 

You could also get hands-on experience by joining the candle-lighting ceremony every year. On the second Saturday of August, you can light a candle to honor everyone who has lost their lives to SMA. It's also a great way to show solidarity with those who struggle with this disease. 

Are you or someone you know impacted by SMA? Share the stories of your loved ones or your own experiences to let people know what the situation is like. Personal stories tend to be great tools for raising empathy and awareness at the same time. 

If you'd like to be involved in more educational pursuits, that's an option, too. Attend or host webinars or other sessions to learn more about SMA and what changes have been made regarding care and treatment. Cure SMA and other organizations provide support and resources for these events. 

Finally, you can also engage in advocacy by contacting policymakers and legislators. Support any initiatives that could benefit the SMA community, such as increasing funding for research and pushing for better healthcare policies. 

The Role of Treatments and Research 

In recent years, there have been major advancements in treating SMA. Treatments like Evrysdi, Spinraza, and Zolgensma have shown promise to improve patients' quality of life. These treatments address the underlying genetic causes of SMA to help slow down or stop the disease's progression. 

Get Help with SSDI for Your SMA Diagnosis

If you're hoping to get disability benefits, the SSA will review your illness and its other related factors. At Cervoni Disability Law, we can help you through the process of getting benefits. We know the ins and outs of the law and offer complete and compassionate legal guidance throughout the process.  

Contact us at 703-241-2625 or request a consultation to get started.