Breakthroughs Begin with You: Cure SMA Celebrates Spinal Muscular Atrophy Awareness Month

August is Spinal Muscular Atrophy (SMA) Awareness Month, so Global Genes invited Cure SMA, a Global Advocacy Alliance member, to share what their involvement in the SMA community. 

Every August, the spinal muscular atrophy (SMA) community comes together to celebrate SMA Awareness Month! While we work year-round to raise awareness for SMA, August is our time to shine a brighter spotlight on the needs, wants, hopes, and experiences of our SMA community.

Now, you may be asking “what is SMA?”

Spinal muscular atrophy (SMA) is a rare neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking. Each year, thousands of infants in the U.S. and around the world are born with SMA. SMA also impacts children, teens, and adults from every background, race, and gender. Approximately one in 50 people, more than six million total, is a genetic carrier for SMA. There are several approved treatments for SMA, but we do not yet have a cure.

The theme of SMA Awareness Month 2023 is ‘Breakthroughs Begin with You’.

For decades, the SMA community has championed innovation and collaboration, which has led to three FDA-approved treatments, newborn screening in 99% of the U.S., and a wide-array of support programs for every stage of SMA.

This month, we’ve asked our advocates and supporters to lead the dialogue and efforts they want to see in the SMA community and beyond. From local events to national advocacy, there are plenty of ways to get involved and help lead the charge. Check out Cure SMA’s events calendar for a listing of local and national events happening this month.

Whether you have SMA, have a loved one with SMA, are a researcher, care provider, industry partner, or are new to the SMA community, this month provides space to honor, reflect, give back and learn.

About Cure SMA

Cure SMA leads the way to a world where everyone impacted by spinal muscular atrophy (SMA) is empowered to lead independent, successful, and fulfilling lives. Since 1984, Cure SMA has been dedicated to the treatment and cure of SMA and has grown to be the largest U.S.-based network of individuals, families, clinicians, and research scientists.

Collectively, we work together to advance SMA research, support individuals and families impacted by SMA, and educate public and professional communities about SMA. Cure SMA funds and directs comprehensive research that drives breakthroughs in treatment, advances access to high-quality care, provides practical support programs, and advocates for the needs of the SMA community.

Learn more at www.curesma.org.