Global events planned to highlight SMA Awareness Month
Patient stories, fundraisers among efforts to raise awareness during August
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- August is SMA Awareness Month, with global events to raise awareness for the genetic disease.
- Significant progress in SMA treatment and diagnosis has occurred, but challenges persist.
- Advocacy groups worldwide are fundraising and sharing stories to support research and improve patients' lives.
August is SMA Awareness Month, and advocates around the world are gearing up to raise awareness about spinal muscular atrophy (SMA) by sharing stories, raising funds, and connecting as a community.
SMA News Today will mark the month with a series of videos in which people with SMA and their caregivers share thoughts on a wide range of topics, from practical advice to funny stories. Four videos will be released over the course of August.
The videos “showcase different perspectives from members of the SMA community,” said Kevin Schaefer, community editorial manager at Bionews, the parent company of SMA News Today.
“With these four videos, adults with SMA and caregivers discuss topics like dating and relationships, traveling with SMA, and humorous stories about caregiving,” said Schaefer, who lives with SMA type 2 and writes the column Embracing My Inner Alien on this site. “We hope that these videos will entertain and provide insight into the daily realities and nuances of SMA.”
Europe’s Rolling Journalists bring voices to campaign
SMA Europe will also spotlight the lived experiences of people affected by SMA, running a social media campaign throughout August called “3,2,1… Rolling!” with SMA Europe’s Rolling Journalists, a team of young advocates with SMA.
“Bringing the voices of young people living with SMA to the table when discussing awareness initiatives is crucial,” said Emilia Debska, communications and marketing manager of SMA Europe. “They offer fresh perspectives and a distinctive way of telling their stories, creating authentic narratives that effectively convey both the importance of the community’s needs and the realities of living with SMA.
The experience benefits the young advocates as well, Debska said, providing “a valuable opportunity to learn about patient advocacy firsthand, while recognising and appreciating the efforts of those who came before them. It helps them understand the advocacy achievements they benefit from today and the collective work that made those advances possible.”
SMA is a genetic disease that affects motor neurons, the nerve cells that control movement. The disease usually manifests in childhood, and for most of human history, SMA has been a leading genetic cause of childhood death and disability.
But over the last decade, the landscape of SMA has changed dramatically. In the U.S., there are four approved disease-modifying treatments that target the root cause of SMA to slow disease progression. In the past, most people with SMA had to endure long diagnostic odysseys to learn about their disease; now, babies in the U.S. and many other countries are tested for SMA at birth.
“Today’s SMA landscape looks very different to even ten years ago,” SMA UK notes on its website. “More people with SMA are living longer, fuller lives than ever before. None of this happened by chance. Every breakthrough has been built on years of campaigning, research, clinical expertise, fundraising, policy change and, above all, the voices of people affected by SMA who have shared their experiences to help create change.”
Although substantial progress has been made, people with SMA still face challenges ranging from inequities in accessing care to a lack of support.
“There are still many unmet needs, and people living with SMA continue to face significant challenges in their daily lives,” said Inés Drake, communications director at FundAME, an SMA advocacy group in Spain.
FundAME is “exploring new approaches, including spinal cord stimulation to restore strength and mobility, innovative strategies to address joint contractures, and robotics to promote greater independence,” Drake said. “During SMA Awareness Month, we invite everyone to help SMA Patient Organizations to open new doors towards a better future for people living with SMA.”
The Muscular Dystrophy Association (MDA) will host an Aug. 25 webinar providing a comprehensive look at SMA’s biology, treatment, and outcomes in the modern age.
Throughout the month, advocacy organizations worldwide will be raising funds to fuel research and support the SMA community. On Aug. 29 in Scotland, a group of fathers of children affected by SMA will hike the tallest mountain in the U.K. to raise funds for SMA UK.
“Continuing to support and fund fundamental research is essential today,” said Olga Germanenko, vice president of SMA Europe. “The more we invest in supporting basic research today, the more progress we will see tomorrow and, perhaps, the closer we will get to the currently elusive goal of a complete cure.”
The U.S. advocacy group Cure SMA is hosting fundraising events across the country. Cure SMA encourages community members to share their stories and spread the word on social media with the hashtag #SMAawarenessmonth. The group will hold a candle-lighting ceremony on Aug. 8 to honor people who have died from SMA.
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