August is Spinal Muscular Atrophy Awareness Month: Spreading Rare Disease Awareness

The month of August is recognized as Spinal Muscular Atrophy (SMA) Awareness Month. This is a time of year in which the community works hard 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 lethal 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 kinds 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 Spinraza. To learn more about spinal muscular atrophy, click here.

Getting Involved

Cure SMA’s 31 day SMA Awareness Month Challenge includes a calendar of awareness activities for every day this month. Click here to see the new activities for each week. Other ways that you can get involved include:

  1. Organizing a candle lighting. It has become a tradition in the community to conduct candle lightings this month to commemorate the people that have died from spinal muscular atrophy. The event takes place during sunset of the second Saturday of August, which is the 14th this year.
  2. Do you live with spinal muscular atrophy? Now is the perfect time to share your story. Email your draft to [email protected]. You can also try to tell your story in your local media. Shoot an email to [email protected] for guidelines before you pitch.
  3. Getting active on social media. Cure SMA has multiple resources to help you make your voice heard on your social media platforms, such as this Facebook profile picture frame, downloadable social media graphics and images, and a community Facebook photo album. Don’t forget to use the hashtags #CureSMA and #SMAAwarenessMonth.
  4. Buying an SMA Awareness Month Packet. Your purchase helps support Cure SMA. Learn more about it here.
  5. Becoming a Cure SMA advocate. Now is a great time to become involved in Cure SMA’s official advocacy program. Click here to learn more.
  6. Donating. While you can always donate to help support this rare community, this month carries specific opportunities to earn rewards while donating and match weekends.

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