SMA community shines light on SMA as part of awareness month
Spirit Week events set to kick off Aug. 9
August is Spinal Muscular Atrophy (SMA) Awareness Month where community members will join together on behalf of patient advocacy and research funding to help find a cure for the rare genetic condition.
“August is our time to shine a brighter spotlight on the needs, wants, hopes, and experiences of our community,” Cure SMA stated on its awareness month website. “Please join us throughout the month of August in fostering conversation, connectedness, and understanding, and most importantly, action amongst and for our SMA community.” The nonprofit was founded in 1984 to support the SMA community and fund research.
SMA affects specialized nerve cells, called motor neurons, that control voluntary movement, and their gradual loss causes progressive muscle weakness and wasting, along with symptoms such as problems with speaking, swallowing, and breathing.
Spirit Week events
“Breakthroughs Begin with You” is the theme of Spirit Week, which kicks off Aug. 9 with a candle lighting to remember those who’ve died from SMA and to honor the community’s diverse people and perspectives. The event occurs at sunset each year on the second Saturday of August. Cure SMA candles can be purchased for the lighting.
Throughout the month, prominent landmarks such as buildings, highway bridges, and entertainment venues are lit up to call attention to SMA. This initiative was made possible through the efforts of community member Shaakira Thomas, who writes on the website that 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,” Thomas said.
Activities for Spirit Week continue with event registration on Aug. 11, advocacy sign-ups on Aug. 12, and a Day of Giving on Aug. 13. On Aug. 14, supporters are encouraged to share with their network, to wear purple and orange on Aug. 15, and on Aug. 16 to take part in National Walk-n-Roll Day. Walk-n-Roll events are also scheduled for Aug. 16 in Walnut Creek, California and Aug. 23 in Roseville, Minnesota. Additional dates and locations are planned through November. Those interested can register for in-person events or participate on their own through the Walk-n-Roll USA program.
“Walk-n-Roll unites communities in a powerful movement to fund groundbreaking research and support individuals and families impacted by spinal muscular atrophy. No matter your connection, your participation in Walk-n-Roll is crucial in moving progress forward,” the event’s webpage states.
Cure SMA is also encouraging patients and advocates to consider being interviewed virtually by a Cure SMA team member for a Story Spotlight, which are featured on CureSMA’s site and every Friday on its Instagram and Facebook pages. Interested? Send an email [email protected].
Looking for another way to spread awareness? Community members can purchase SMA awareness kits and gear, including T-shirts and sweatshirts, belt bags, backpacks, and blankets at the Cure SMA merchandise store. Awareness month supporters are also encouraged to “Get Social” by sharing their stories, SMA gear, by posting SMA facts and graphics, and by updating their social media banners, tagging @CureSMA and using the hashtag #SMAwarenessmonth.
Supporters are also invited to check out the SMA Awareness Month theme song, “Lift Me Up” and Cure SMA is offering a podcast recommendations playlist on Spotify. Supporters can learn more about topics such as SMA and disability, with podcasts recommended by community members.
Faces of SMA
Bionews Inc., the publisher of SMA News Today, will present humorous stories about living with SMA.
“We launched Faces of SMA last year as a multimedia campaign, featuring both written essays and videos. The use of videos last year was an especially engaging way for different community members to tell their stories. This year, the video stories revolve around funny stories living with SMA,” said Kevin Schaefer, Associate director of community content and SMA columnist. “As much as we focus on the medical side of the disease and the difficulties that come with SMA, we also want to create content that is on the lighter side, and that highlights the humorous aspects of living with a disability. We hope that the stories we’ve gathered for this year, all from adults with SMA, will entertain and resonate with others in our community.”
Finally, SMA Europe is launching its 2025 awareness campaign titled “Connecting the Dots,” which will run on all social media platforms from Aug. 1-31. Its goal is to “enhance the importance of transdisciplinary and breakthrough research on spinal muscular atrophy and bring together the SMA and research community of SMA Europe.”
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