Spinal muscular atrophy (SMA) is a genetic disease that robs people of physical strength, impacting their ability to walk, eat, and breathe. With your help, we can build a stronger future for all individuals with SMA.

Redefining Rare

There are approximately 12,000 people in the U.S. who have SMA, yet we are part of a greater community—the rare disease community—that comprises of more than 300 million people worldwide. But we don’t believe that being “rare” has anything to do with having SMA.

This February, Cure SMA wants to redefine what it means to be “rare,” culminating with Rare Disease Day on Sunday, February 28. We are celebrating the different perspectives, interests, personalities, cultures, and more that make up the SMA community.

Thanks to the tremendous progress we have seen in research, treatment, and care for individuals with SMA and their families, our community is more energized than ever. Together, we can create an even stronger voice for the SMA community—one that is made up of 12,000 unique individuals and proud of our past, present, and future.

Ways to Participate

We want you to connect with Cure SMA and the rest of the SMA community throughout the month. Check out these engagement opportunities planned for February and beyond.

“I am ______” Social Posts

Who says new year’s self-reflection must end in January? This month, in recognition of Rare Disease Day, we want to provide an opportunity for you to redefine yourself and share with our community what makes you unique. This is about the SMA community Redefining Rare. Share who you are–whether you’re a student, artist, power soccer player, marketing professional, book aficionado, amateur chef, researcher, or math whiz. We want to know the real you!

How to Get Started

  1. Screenshot or download the slides for Instagram or Facebook.
  2. Fill in the blank to the “Answer” slide of your preference and share a little bit about your unique self!
  3. Share the “Instruction” slide to encourage your friends to join in, too!
  4. Tag Cure SMA (@CureSMAorg) to be added to our Instagram story and highlights.

Answer Slide with Tech Background


Answer Slide with Social Background


Answer Slide with Learning Background


Answer Slide with Science Background


Answer Slide with Caregiving Background


“I am ______” Social Videos

After you have shared a little about yourself, let’s continue to build connections within the SMA community! Cure SMA wants to get to know the varied personalities of the SMA community even better. Throughout February, we will be posing a series of engaging questions on our Instagram stories and encourage our community to record and post a video response. When you post, tag @CureSMAorg for the chance to be featured on our Instagram stories!

Sample Questions:

Want to get your friends involved? Download the instruction slide and video prompts to share on your Instagram stories!

Social Media Sharing

February presents a great opportunity to educate around SMA and celebrate the achievements the community has seen in recent years. There are several ways we are working to support your social media efforts to educate your friends and online communities.

  • Download and share Cure SMA “fact graphics” on your personal social media page(s) by visiting our newly
    launched Social Media Resource Page.
  • Participate on Facebook! Post photos to the comment section of the designated Cure SMA Facebook post or email them to [email protected]. Cure SMA will add to the Rare Disease Day 2021 album once received.

Don’t forget to tag Cure SMA and use the hashtags #CureSMA and #RedefiningRare.

Share Your Story!

Now is the perfect time to raise our collective voice and share stories and experiences of those in the SMA community. Read and share our recent Community Spotlight stories featuring people in the SMA community. Interested in sharing your story? Email [email protected] to learn more.

Recent Community Spotlights:

Choose to Advocate

February is also a good time to think about how you can get involved in Cure SMA’s advocacy efforts. Advocacy is critical in advancing SMA-related policies, and the voices of the SMA community are incredibly important and can have an impact. Here are some actions you can take now:

The 117th Congress has reconvened and you can help make sure new and returning Members of Congress are aware of SMA and the priorities of our community.

Share SMA Community Priorities

Today, 33 states have implemented newborn screening for SMA, but this leaves 1 in 3 U.S. newborns at risk of a delayed diagnosis.

Share Need for Newborn Screening

If you are looking for ways to get involved in advocacy for the SMA community, fill out this form to become a Cure SMA advocate.

Ways to Give in February

Through our continued success, we are expanding our role as a leader in both the SMA community and the greater rare disease community. This Rare Disease Day—as Cure SMA looks to redefine “rare” for the SMA community—we ask you to make a gift and help accelerate the programs that are changing the future of SMA. Turn your passion into action by getting involved with one of our fun giving opportunities this month.

Click Here to Donate Today

  • Virtual Flower Bouquet – Give a gift to Cure SMA between Friday, February 12 and Monday, February 15, and we will send a virtual floral bouquet to a loved one or friend in the SMA community. This promotion is generously sponsored by Natera.
  • Rare Disease Day Gift Match – Triumph Mobility Inc. is matching all gifts, up to $2,500, made to Cure SMA between Friday, February 26 and Sunday, February 28. Double your donation to double your impact! 
  • Purple Circle Giving Society – Cure SMA is excited to announce its new Purple Circle Giving Society. Starting in 2021, anyone who makes a general, non-event gift over $1,000 will automatically become a member of this giving society and earn exclusive updates/communications from Cure SMA. 

Contact [email protected] with questions about these opportunities or for other ways to give to Cure SMA. 

About Rare Disease Day

Rare Disease Day is the official international day to raise awareness for rare diseases. It was launched by EURODIS in 2008. Organizations from across the globe, including Cure SMA, recognize this day as an opportunity to bring attention to and support for people with a rare disease.