Advocates come together for SMA Awareness Month in August
Candle lightings, walks, stories and swag boost awareness, research funding
August is Spinal Muscular Atrophy (SMA) Awareness Month, and patients, caregivers, doctors, researchers, and other supporters are coming together to improve disease knowledge, patient advocacy, and research funding to help find a cure for the rare genetic condition.
SMA is a neuromuscular disorder that affects the nerve cells, or motor neurons, in the spinal cord that control voluntary muscles. The loss of motor neurons causes progressive muscle weakness and atrophy, as well as problems with speaking, swallowing, and breathing, along with other symptoms. SMA is believed to impact 1 in 8,000 to 10,000 live births globally.
Cure SMA, a nonprofit founded in 1984 to support the SMA community and fund research to find a cure, is marking its 40th anniversary this year. The organization is offering several ways for advocates to participate in SMA Awareness Month events in the coming weeks.
“A couple things we’re excited about this August: SMA Awareness Month Spirit Week (Aug. 10-17) … [and] National Accessible Air Travel Day (Aug. 20),” Sarah McCall, senior manager, content marketing for Cure SMA, said in an email to SMA News Today.
For several years, Cure SMA has been advocating for better wheelchair storage for air travel. A prototype is in the works from Air4All, but it’s still in the development stage.
“We’ll be … reminding folks there is more work to be done to ensure everyone has access to accessible air travel,” McCall said.
Participate in Spirit Week and ‘Get Social’
Spirit Week, with this year’s theme of “Breakthroughs Begin with You,” kicks off Aug. 10 with an annual candle lighting. The event occurs at sunset each year on the second Saturday of August. During the event, candles will be lit to remember those who have died from SMA, and to honor the diverse people and perspectives that make up the community.
Popular landmarks like buildings, highway bridges, and entertainment venues will be illuminated with awareness lighting throughout the month, with the aim of drawing attention to SMA and raising awareness. This program was started by community member Shaakira Thomas, who states on the website: “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.”
Additional activities throughout Spirit Week will be featured on different days: Aug. 12 is registering for an event; Aug. 13 is becoming an advocate; Aug. 14 is giving; Aug. 15 is sharing on social media; Aug. 16 is wearing purple and orange; and Aug. 17 is celebrating National Walk-n-Roll Day.
To mark National Accessible Air Travel Day on Aug. 20, Cure SMA “will be sharing air travel stories and celebrating the recent aviation legislation,” according to McCall.
The Cure SMA Walk-n-Roll, held annually in more than 40 communities nationwide, is the nonprofit’s largest event dedicated to fundraising and awareness for the SMA community. Walk or walk-n-roll events this month are planned in Carmel, Indiana, on Aug. 3; in Walnut Creek, California, on Aug. 17; and in Eagan, Minnesota, on Aug. 24. Other dates in additional locations are also planned throughout the year.
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.
Participants in all of the month’s events are encouraged to “Get Social” by sharing their photos on social media and tagging @CureSMA, using the hashtags #SMAwarenessmonth and #CureSMA.
SMA community members also are encouraged to visit the Cure SMA Merchandise Store and consider purchasing SMA awareness kits and gear, including T-shirts and sweatshirts, belt bags, candles, backpacks, and blankets.
Cure SMA also is offering a Podcast Recommendations playlist on Spotify. Supporters can check it out to learn more about topics such as SMA and disability, with podcasts recommended by community members.
In addition, community members can listen to the 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 Record.
Bionews to offer monthlong ‘Faces of SMA’ campaign with essays, videos
Bionews, the publisher of SMA News Today, has a “Faces of SMA” initiative planned to amplify and champion the voices of the SMA community.
Throughout August, SMA News Today is recognizing SMA Awareness Month with a multimedia celebration featuring a collection of written essays and video interviews from SMA patients and caregivers. These stories highlight some of the unique challenges of living with SMA, and feature a diverse range of topics: relationships, parenthood, careers, advocacy work, and more. Supporters can follow the series on the website or visit Facebook or Instagram using the hashtag #FacesofSMA.
TreatSMA, a U.K. charity committed to ensuring hospitals across Great Britain are offering the highest standard of medical care to those with SMA, has no special events planned for the month, but is actively engaging in efforts to ensure that patients in the U.K. have access to necessary therapeutic interventions.
“We are still working towards ensuring that SMA treatments are available to all those who need them,” Gennadiy Ilyashenko, PhD, co-founder of TreatSMA, said in an email to Bionews. “We do have other plans for the near future, but for now the goal is to secure the treatments.”
About the Author
