August is SMA Awareness Month

SMA (spinal muscular atrophy) is disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

While our community works year-round to raise awareness of and funds for SMA, August is a great time to spotlight those efforts. In addition to our usual work—hosting and attending events, telling our stories to neighbors and friends, sharing information about SMA, using social media to raise awareness, and more—many families and chapters plan special events or efforts around SMA Awareness Month.

How to Participate 

Ideas for Awareness Month activities include:

  • Attend an Awareness Day with their local major or minor league baseball team
  • Request a proclamation from state or local government
  • Host an awareness-themed fundraiser
  • Organize a group candlelighting
  • Contact local media or celebrities
  • Participate in social media awareness efforts, such as our community album.

Interested in any of these? Email fundraising@curesma.org, and tell us where you live and what you're planning. Whether your idea relates to fundraising or to general awareness, this email address is a great way to get in touch with the national office staff member who works with your area of the country.

If you're not already connected with your local chapter, use our chapter page to locate their contact information. There may be families near you who are interested in joining forces for one or more of these ideas.

Social Media Outreach

During this year's SMA Awareness Month, we’re offering a number of ways to help spread awareness for SMA on social media.

  • Update your Facebook or Twitter profile picture to show your support for SMA Awareness Month. You can also share facts and stats about SMA, and tell your friends why SMA Awareness Month is important to you.
  • Participate in our annual SMA Community Album

Get Involved 

During the month of August, please send us photos of what SMA awareness means to you. It could be a photo of the person who inspires you to raise awareness. It could be a photo taken during an event or activity (like a candlelighting) for SMA Awareness Month. It could be a more abstract representation of awareness, or our community, or your family. Your imagination is the only limit.

Submit your Awareness Month photos to our Facebook page, or tag us on Twitter and Instagram with the #cureSMA hashtag (just be sure we aren't blocked from seeing it due to privacy settings), or email it to us at stories@curesma.org and put "SMA community album" in the subject line. We'll be adding and sharing photos all August long!

Candlelighting

At sunset on the second Saturday of August, the SMA community lights candles to remember those who have passed away from SMA, and to honor those who are living with SMA. This year's candlelighting date is August 11, 2018.

Don't forget to submit your candlelighting photos to our Facebook community album!

Proclamations

Reach out to your state and/or local government to make a proclamation for SMA Awareness Month. If your state or city issues one, send us a copy at fundraising@curesma.org and we'll share it here!

Example 

MLB Awareness Games 

August 2, 2018 - Chicago Cubs 

August 5, 2018 - Portland Sea Dogs

August 7, 2018 - Cleveland Indians 

August 19, 2018 - Chicago White Sox

August 20, 2018 - Boston Red Sox

August 24, 2018 - Arizona Diamondbacks

August 26, 2018 - New Hampshire Fisher Cats

August 26, 2018 - Tampa Bay Rays 

Be sure to check out our events calendar to find out more about events going on in your area, from into the fall and 2019! 

Tools

We've put together a series of tools that will help you as you plan for awareness month.

  • Awareness and advocacy kit, which includes key information about SMA and Cure SMA that can use when putting together a blog post, sponsor request letter, story pitch, or anything else for Awareness Month and beyond! It also includes graphics you can share, ideas for awareness and fundraising, and the latest information about our advocacy efforts.
  • Medical professional awareness kit, to share with your primary care provider, neurologist, nurse, physical or occupational therapist—anyone who cares for you or your child and needs more info on SMA.
  • Media kit, to use when drafting story pitches for local or national media. Have a media connection or want to make a pitch? Email megan@curesma.org for more information and ideas before making your pitch!

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