Across August, Variety of Events Celebrate SMA Awareness Month
From a Zoom book discussion to candle lightings, efforts to mark Spinal Muscular Atrophy Awareness Month, observed each August, are underway to increase awareness of this rare genetic disease and raise funds to battle it.
Supporters are involved in a range of activities that including swapping out their social media photo frames, sharing personal stories and disease facts, learning about advocacy efforts, and hosting virtual events related to spinal muscular atrophy (SMA), a neurodegenerative disorder that is believed to affect one in 8,000 to 10,000 individuals globally.
Organized by Cure SMA, which funds disease research and supports patients and their families, the yearly event also is a chance to celebrate and take pride in the community.
“While our community works year-round to raise awareness and funds for SMA, August is our time to put a spotlight on those with SMA,” Cure SMA states on its Awareness Month webpage. “As we begin to come out on the other side of the COVID-19 pandemic, we continue to engage the SMA community … by hosting virtual events, telling compelling stories, and using social media to raise awareness and share information about SMA.”
This year, Cure SMA has a variety of virtual activities and events lined up to spread awareness about SMA and strengthen the community bond.
“The past year and a half has taught us that we all can rise to meet any challenge in front of us,” Cure SMA said in an e-mailed statement to SMA News Today. “This SMA Awareness Month, we will come together to bring awareness and show our pride as part of the spinal muscular atrophy community.”
As part of its offerings, the organization is introducing its 31-Day SMA Awareness Month Challenge, which gives supporters a chance to share stories, raise funds, participate in events, and get involved with key advocacy issues.
Each Sunday, Cure SMA will share on its Awareness Month webpage a week’s worth of ways for supporters to participate in the challenge.
For the week of Aug. 1–7, the organization is encouraging people to add this year’s official SMA Awareness Month frame to their social media profiles, and to attend a Zoom event — an evening with Will Leitch, author of “How Lucky: A Novel,” the story of a young man who’s wheelchair-dependent due to disease, and his efforts to solve a mystery.
Supporters throughout the week are also asked to share Cure SMA’s new “What is SMA?” graphic on their social media channels. On Aug. 4, National Chocolate Chip Cookie Day, participants can support the organization by hosting a bake sale.
The following day is an opportunity to share a photo or story from a favorite Cure SMA event, and on Aug. 6, supporters are asked to send an email to [email protected] to learn how to “light up your town” in August. On Aug. 7, participants are invited to share photos from the annual observance on the organization’s SMA Community Album on Facebook.
Beyond the 31-Day Challenge, Cure SMA has other ways to get involved in Awareness Month. Those include an Aug. 14 candle lighting that pays tribute to those who lost their lives to SMA, and that honors the diversity — perspectives, interests, personalities, and more — of the SMA community. The event occurs each year on the second Saturday of the month. Participants are encouraged to submit their candle lighting photos to the organization’s Community Album.
Awareness Month supporters are invited to read and share Cure SMA’s Community Spotlight stories, which feature people who have SMA and their families. Those who wish to share their stories may send an email for more information to [email protected] Anyone interested in sharing their stories with local or national media should first send an email to [email protected] for more information and assistance in fleshing out ideas.
Other ways to increase awareness include downloading and sharing Cure SMA “fact graphics” on their social media platforms. One graphic clearly states that “SMA does not affect a person’s ability to think, learn, and build relationships with others.” Another notes that “Cure SMA has invested approximately $40 million in basic research grants and drug development projects that have led to breakthroughs in SMA.”
The organization is also selling, for $55, a Cure SMA Awareness Kit that includes bracelets, fact cards, temporary tattoos, and a variety of stickers.
Cure SMA hopes supporters will also take the time to get involved with the organization’s advocacy efforts, which are critical to advancing SMA-related policies, such as the push for federal investment in personal care attendants and caregiving services for those with SMA. Other issues have to do with supplemental security income, employment, transportation, and air travel.
Because there may be families nearby interested in joining forces, supporters are invited to visit the Cure SMA Chapter Page for contact information for local chapter leaders.
Elsewhere, Treat SMA in the United Kingdom is marking SMA Awareness Month by focusing on four themes: hope, remember, change, and aspire. Throughout the month, community videos based on those themes will be shared by the organization. Treat SMA will also present a remembrance of those died due to this disease.
Unicity Healthcare, which develops integrated care management solutions for people in the Greater New York and New Jersey areas, is observing the month by offering SMA information including disease causes, types, diagnosis, and treatment. It’s also offering tips for caregivers, and advice concerning when home healthcare for patients should be considered.
Independent Living in the U.K., advises people with disabilities and caregivers, also is providing an overview of key information about SMA, in addition to available resources.
To mark Awareness Month, BioNews, which publishes SMA News Today, is again reprising its “31 Days of SMA” series throughout the month. Each day in August, a different member of the SMA community — patients, caregivers, family members, and others — will share their journey and unique insight into living with SMA. The narratives are posted on its SMA News Today website, and its Facebook and Instagram pages.
“This year’s ‘31 Days of SMA’ initiative is nothing short of stellar,” said Katie Napiwocki, project co-manager — along with Kevin Schaefer — and an SMA News Today columnist. “Our featured group shows just how talented, insightful, diverse, and interconnected the SMA community really is. With topics covering all facets of life — from entrepreneurship and artistic influencers, to mental health matters and fairness in social representation — there’s sure to be a story that speaks to everyone’s heart in one way or another.”
Napiwocki added: “Many thanks to all the collaborators and contributors alike who have worked so hard to make this project shine brighter than a starlit sky in August.”
“31 Days of SMA” opened Aug. 1 with Alvaro Cheherlian — in the post “Being an Entrepreneur Makes Me Feel Seen” — talking about the challenges of guiding a business while coping with SMA type 2. He’s the founder of the clothing brand, Wrekt Svpply.
“Building a brand from the ground up wasn’t easy,” Cheherlian wrote. “There were times I wanted to give up, and times I ran out of money. But I never gave up. As individuals with SMA, we might not be physically strong, but we’re definitely mentally strong. And we can be seen.”