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SMA Awareness Month 2024

Spinal muscular atrophy (SMA) is a progressive 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.

Learn

About SMA Awareness Month

August is SMA Awareness Month! While we work year-round to raise awareness and funds for SMA, August is our time to shine a brighter spotlight on the needs, wants, hopes, and experiences of our community. SMA Awareness Month strives to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of SMA that stem from chromosome mutations.

This month, Cure SMA is offering a variety of ways that you can participate by advocating, giving, fundraising, educating, and raising awareness of SMA. Below, we’ve compiled ideas for how you can honor SMA Awareness Month on your own, in your community, or with those you love.

It is through your support that Cure SMA funds research, care centers, and support programs to make life better for those living with SMA. Please join us throughout the month of August in fostering conversation, connectedness, and understanding, and most importantly, action amongst and for our SMA community.

Important Milestones and Events

Engage

Get Social!

Become an SMA Awareness Month social media ambassador with these quick and easy steps!

  1. Update your social media banner – Facebook or LinkedIn
  2. Share your experiences and connection to the SMA community – Tag @CureSMA and use #SMAawarenessmonth.
  3. Share our general SMA fact & quote graphics.
  4. Comment on and share Cure SMA’s posts on Facebook, Instagram, LinkedIn, Twitter, and TikTok throughout the month.
  5. Check out our SMA Awareness Month community video.
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SMA Awareness Month Share Graphics

Check out our 2024 SMA Awareness Month social share graphics!

  1. Definition of SMA 
  2. FDA-Approved Treatments
  3. Adult Community
  4. What is Spinraza?
  5. What is Zolgensma?
  6. What is Evrysdi?
  7. Carriers of SMA
  8. SMA Does Not Affect
  9. Thank You!

Tell Us Your Story

Walk-n-Roll familyUse Your Voice!

Consider being interviewed virtually by a member of the Cure SMA team for a ‘Story Spotlight.’ Story Spotlights are featured on CureSMA.org and every Friday on Instagram and Facebook!

Interested in sharing your story with our community? Email [email protected] and tell us you’d like to participate. A member of our team will reach out to assist you with constructing your unique and valuable story.

Give

Attend or Fundraise for a Cure SMA Event

Participate in a Walk-n-Roll or other Cure SMA event. Our Walk-n-Roll program is one of the best ways to support and fundraise for people with SMA in your community and beyond. Check out our events and register or donate to make an impact with supporters across the country.

Donations are the foundation to Cure SMA’s progress and without the support from thousands of people across the country, our progress would not be possible.

Donor-Drive_WNR5
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Get Shopping

Shop today to support Cure SMA! All branded items help spread SMA awareness year-round and a portion of each purchase you make funds research, education, support programs, and more for the SMA community. We have many wearables and accessories to choose from! We also suggest purchasing a Cure SMA Awareness Kit which comes with a variety of promotional items to share with your friends and family. There’s no better time to shop for Cure SMA merch than the month of August!

Listen In!

We invite you to check out our Podcast Recommendations playlist on Spotify. Learn about topics including SMA, disability and more with podcast recommended by community members.

Also, be sure to listen to our SMA Awareness Month theme song, “Lift Me Up” with award winning artist, Lachi, Broadway composer, Gaelynn Lea, and acclaimed songwriters, April Rose, James Ian (adult with SMA), and Kulick released through RAMPD Records.

Honor

Candle Lighting on Saturday, August 10

Each year, our community lights candles to remember those who have passed away from SMA, and to honor the diverse people and perspectives that make up our community. The annual candle lighting occurs at sunset on the second Saturday of August. This year’s candle lighting will take place on Saturday, August 10, 2024. Don’t forget to share your candle lighting photos on social media by tagging @CureSMA and using #SMAawarenessmonth #CureSMA.

Purchase a Cure SMA candle for the 2024 candle lighting!

Candlelight for SMA Awareness Month
Shaakira Thomas- Illuminate Image 2

Awareness Lightings

Awareness lightings at popular landmarks such as buildings, highway bridges, and entertainment venues help to bring attention to the SMA and SMA Awareness Month in a unique way. Many of these locations will share photos on their social media. The Cure SMA colors are used to represent the entire SMA community and all the hard work and efforts that are put in towards research, care, and support all year long.

Be sure to snag a photo of your local lighting and send it to us at [email protected] or tag us on social media. We can't wait to see!

This program was started by community member, Shaakira Thomas, who has dedicated a considerable amount of her free time to researching buildings that do awareness lightings and filling out forms to ensure major landmarks in different cities across the U.S. light up in August. “To me, SMA Awareness Month is not only about ways of raising awareness, but it is also a time to honor and celebrate everyone impacted by SMA. We are all fighters and being able to hear everyone’s stories is amazing. It brings me hope and strength.”

Advocate

During SMA Awareness Month, there are many ways to get involved in SMA advocacy to educate others about SMA and the priorities of the SMA community. Become a Cure SMA Advocate by signing up through our new advocate signup center and indicating the advocacy issues you are most interested in.

Once signed up, check out our current action alerts to send prewritten messages to your congressional members. Next, consider arranging meetings with your Members of Congress and/or their local office staff to highlight the advocacy issues that matter most to you.

August is a congressional recess month where your Senators and Representatives work in their states or congressional districts rather than in Washington, DC. This is a great time for individuals and families with SMA to connect with their congressional offices.

The SMA community’s success on newborn screening and other priority areas started with advocates like you who took action and shared their experiences. Help continue this success by taking action during this SMA Awareness Month. Reach out to Cure SMA’s Advocacy team if you have questions or need assistance.

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