The month of August is recognized as Spinal Muscular Atrophy (SMA) Awareness Month. This is a time of year in which the community works to spread awareness about this rare disease both among the general public and in the medical field. While some great progress has been made in the treatment of this disease in recent years, there is still an urgent need for greater awareness. This year, Cure SMA has activities and actions you can take every single day this month to help out.
About Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy is a type of neuromuscular disorder in which the motor neurons are destroyed, leading to muscle wasting. Without prompt treatment, the disease is fatal in many cases. This disorder is linked to genetic defects of the SMN1 gene. This gene encodes a protein called SMN and, when not present in certain amounts, neurons are unable to function. There are different types of spinal muscular atrophy that are categorized by when symptoms first appear. These symptoms may include loss of reflexes, muscle weakness and poor muscle tone, problems with feeding and swallowing, developmental delays, respiratory muscle weakness, tongue twitching, and a bell-shaped torso. Treatments for the disorder include gene therapy and a medication called nusinersen, marketed as Spinraza. To learn more about spinal muscular atrophy, click here.
Getting Involved
There are lots of ways to help play your part in spreading spinal muscular atrophy awareness during the awareness month of August:
- Use the linked awareness graphics to update your social media banner on LinkedIn or Facebook.
- Do you live with spinal muscular atrophy? Now is the perfect time to share your story. You can get in touch by sending your story to [email protected].
- Get active on social media. Share your patient experiences on your social media platform of choice. Don’t forget to use the hashtag #SMAAwarenessMonth and tag @CureSMA. Cure SMA also has a ton of social media graphics you can use to share. You can also play your part by sharing the organization’s posts about SMA awareness this month.
- Buy an SMA Awareness Kit. Your purchase helps support Cure SMA. Learn more about it here.
- Become a Cure SMA advocate. Now is a great time to become involved in Cure SMA’s official advocacy program. Click here to learn more.
Editor’s Note: Chronic conditions and rare diseases don’t discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
