While our community works year-round to raise awareness of and funds for SMA, August is our time to put a spotlight on those efforts and those impact by SMA. During this unusual year, we will still work to engage the SMA community and the general public around SMA Awareness Month by hosting virtual events, telling compelling stories, and using social media to raise awareness and share information about SMA.
Conversations with the Community
This August, we will be debuting a new video series on the Cure SMA YouTube channel, called “Conversations with the Community.” We will feature one-on-one conversations between a diverse cross-section of the SMA community members, including teen, adults, parents, and healthcare professionals. Check back here, and on our social media channels, for more details on these conversations as they are made available.
You can take part in SMA Awareness Month activities as well! Below are some ideas you and your loved ones can do to spread awareness of SMA and strengthen your bond with the SMA community. You don’t have to do them all, but rather choose the things that best fit your schedule and interests.
Organize a Group Candle Lighting
Each year, the SMA community lights candles to remember those who have passed away from SMA, and to honor those who are living with SMA. This occurs at sunset on the second Saturday of August. This year’s candle lighting will take place on August 8, 2020. Don’t forget to submit your candle lighting photos to our Facebook community album!
Participate in Social Media Awareness Efforts
During this year’s SMA Awareness Month, we’re offering several ways to help spread awareness for SMA on social media.
- Change your profile picture to include the official Cure SMA banner for SMA Awareness Month.
- Download and share Cure SMA fact graphics on your personal page or pages you manage.
- Fact graphic 1 – Definition of spinal muscular atrophy (SMA).
- Fact graphic 2 – SMA doesn’t affect a person’s ability to think, learn, and build relationships with others.
- Fact graphic 3 – People affected by SMA are students, lawyers, graphic designers, and artists, among a myriad of other roles.
- Fact graphic 4 – The SMA Awareness Candlelight Vigil is Saturday, August 8th at sunset.
- Fact graphic 5 – Cure SMA has 36 chapters and the community is over 120,000 strong.
- Fact graphic 6 – We’re on the verge of further breakthroughs that will continue to change the course of SMA.
- Participate in the SMA Awareness Month Community album on Facebook! Post photos to the comment section of the Facebook post or email them to [email protected] for Cure SMA to add.
- Tag Cure SMA in SMA Awareness Month events you and your loved ones join and use the hashtags #CureSMA and #SMAAwarenessMonth.
Follow us on Facebook, Twitter and Instagram for Awareness Month updates.
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 Community Spotlight stories featuring people in the SMA community. Interested in sharing your story for SMA Awareness Month? Email [email protected] to learn more.
Learn What You Can Do to Talk with the Media
We’ve put together a that will help you plan for awareness month. Use the media kit when drafting story pitches for local or national media. Have a media connection or want to make a pitch? Email [email protected] for more information and ideas before making your pitch!
Choose to Advocate
SMA Awareness Month is 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 affected individuals are incredibly important and can have an impact. Here are some actions you can take now:
If you feel inspired to get involved and make an impact on the lives of those affected by SMA, here are some fun giving opportunities taking place during SMA Awareness Month. Contact [email protected] with questions about SMA Awareness Month.
Cure SMA Opportunities
- Hearts for Ezra Foundation will match all donations made to Cure SMA over the weekend of August 14-16, up to $2,500.
- Anyone who donates a gift of $25 or more over the weekend of August 21-23 will have a chance to win a Cure SMA Swag Bag, sponsored by Natera, Inc.
- If Cure SMA receives 50 gifts over the weekend of August 28-30 Dr. Mary Schroth will dye her hair purple and post on social media!
- Virtual Cookie Baking Workshop with Baker Bettie to support Cookies 4 SMA on August 30th – Register here!
You can find our Cure SMA donation page by clicking here.
You can also visit the Cure SMA Chapter page to find contact information of your local chapter leader. There may be families near you who are interested in joining forces for one or more of these ideas.