Awareness Month shines brighter spotlight on SMA community
Annual event seeks to boost SMA awareness, research funding
“Walk-n-Rolls,” storytelling, and candle-lightings mark some of the events happening this August for SMA Awareness Month, in an effort to raise disease knowledge, patient advocacy, and research funding to help find a cure for the rare genetic disease.
Each August, SMA Awareness Month strives to raise awareness of spinal muscular atrophy (SMA), the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of the disease that stem from chromosome mutations. This neurodegenerative disorder is believed to affect one in 8,000 to 10,000 individuals globally.
“While we work year-round to raise awareness and funds for SMA, August is our time to shine a brighter spotlight on the needs, wants, hopes, and experiences of our community,” Cure SMA stated on its website. The nonprofit organization funds disease research and supports patients and their families, and is offering ways to participate in awareness month events this year.
Supporters encouraged to ‘Get Social’
Supporters are encouraged to “Get Social” by updating their social media banners on Facebook, LinkedIn, Twitter, or Instagram.
People with SMA can tell their stories to share their experiences and wisdom with others in the community. They can also be interviewed by Cure SMA team members as part of the nonprofit’s “Story Spotlight.” Those interested in the opportunity can email their stories ([email protected]), expressing their interest in participating, and a team member will reach out to assist. Individuals who want to engage local or national media can send an email to Amy Thomasson ([email protected]), vice-president of marketing and communications, for more information and assistance in developing ideas.
To kick off awareness month this week, supporters are encouraged to share SMA facts and include graphics on their social media on Aug. 2. They can also donate $5 to support SMA research on Aug. 4 in lieu of buying coffee, and then update their social media banners and email signatures on Aug. 7 to inform friends and colleagues about the importance of SMA awareness.
On Aug. 12, the annual candle-lighting at sunset will be held. 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. Participants can share their candle-lighting photos on social media by tagging @CureSMA and using the hashtags #SMAawarenessmonth and #CureSMA.
SMA awareness kits and gear, including T-shirts, sweatshirts, belt bags, candles, backpacks, blankets, and more, can be purchased at a discount at the Cure SMA Merchandise Store.
While we work year-round to raise awareness and funds for SMA, August is our time to shine a brighter spotlight on the needs, wants, hopes, and experiences of our community.
The third and fourth weeks in August feature Permobil Match Day on Aug. 17 — when the company, a seller of assistive devices, will match the first $1,000 in donations to Cure SMA — and a virtual Walk-n-Roll sign-up day on Aug. 21.
The Cure SMA Walk-n-Roll is a nationwide fundraising program that brings communities together to support the organization’s funding of life-changing research, resources, and programming for those impacted by spinal muscular atrophy. Walk or walk-n-roll events this month are planned in Carmel, Indiana, (Aug. 5), Walnut Creek, California, (Aug. 19), Eagan, Minnesota, (Aug. 26), and Naperville, Illinois, (Aug. 27). A virtual walk-n-roll is also planned.
On its website, Cure SMA reiterates that “the community’s success on newborn screening and other priority areas started with advocates who took action and shared their experiences. Help continue this success by taking action during this SMA Awareness Month.” Throughout the month, supporters can comment on and share Cure SMA’s posts on Facebook, Instagram, LinkedIn, Twitter, and TikTok.
People can also join the Cure SMA Advocacy team, and help provide answers and assistance to other community members in need. Those interested in advocacy can sign up through the new action center and indicate the advocacy issues that are of most interest.
Stories published for BioNews’ month-long Community Spotlight Campaign
“Our main goal is to share 10 compelling stories from members of the community themselves,” said Marco Jimenez, social media manager. “These stories will delve into a wide range of themes, providing diverse perspectives and life experiences with SMA. We aim to shed light on how individuals have navigated and coped with SMA in their lives.” Themes include having a strong mindset, embracing life with SMA, being a teacher with the disease, studying abroad, practicing perseverance, and more.
“Raising awareness is super important to us, and we’re committed to generate content that genuinely resonates with our audience, reaching as many people as possible,” Jimenez added. “We truly believe that together, we can make a significant impact and raise awareness of SMA and the challenges it poses for those affected by it.”
Finally, although no specific events are planned, TreatSMA, for the upcoming year “will concentrate on ensuring that treatment will become formally approved and available throughout U.K. for all patients. This has been our goal and we will continue to do our best to make it a reality!” wrote Gennadiy Ilyashenko, PhD, co-founder of TreatSMA, in an email to BioNews.