New SMA awareness campaign aims to link research, patient needs
SMA Europe bringing community together by 'Connecting the Dots'
Called “Connecting the Dots,” a new awareness campaign from SMA Europe is highlighting the importance of transdisciplinary and breakthrough research in spinal muscular atrophy (SMA).
The nonprofit umbrella organization behind the initiative, comprised of SMA advocacy and support groups from across Europe, said its aim is to bring together the patient and research communities.
“Our awareness campaign shows how SMA Europe is connecting the dots between the needs of the community and the researchers dedicated to addressing them,” Nicole Gusset, CEO of SMA Europe, said in an email to SMA News Today.
The campaign was launched midsummer: August marks SMA Awareness Month.
SMA Europe says the initiative highlights its commitment to aligning the research agenda with the community’s real needs. To that end, five 2024 research projects were showcased through the 12th Call for Research Proposals.
According to the nonprofit, each demonstrates progress in disease understanding and treatment while strengthening ties within the SMA community.
Social media key to SMA Europe’s awareness campaign
One of the highlighted projects, led by Nathalie Didier, PhD, of INSERM in France, is evaluating the link between muscle stem cells and motor neurons, with the aim of determining whether or not treatment with Evrysdi (risdiplam) preserves muscle stem cells. Motor neurons are specialized nerve cells that control movement; they gradually sicken and die off in people with SMA.
Didier’s project is titled “Skeletal Muscle Stem Cells as untapped therapeutic targets for SMA long-term treatment (SATSMA).”
The researcher discussed the importance of her work with Christian, a patient representative who volunteers at SMA Europe and has lived with the disease for almost 30 years. The two-part video appears on the campaign website.
According to SMA Europe, this conversation demonstrates the patient-doctor connection at the heart of the campaign.
“Through our Call for Research, we help foster breakthrough science and bring new health solutions closer to people living with SMA,” Gusset said.
Additional patient representatives from across the continent shared their perspectives, with the goal of ensuring that real-life experiences guide scientific discussion, per the nonprofit.
Nicole Gusset serves as the CEO of SMA Europe. (Courtesy of SMA Europe)
SMA Europe noted that social media is playing a significant role in spreading awareness of its campaign for this year. Supporters are encouraged to use hashtags such as #WeAreOne, #SMAAwareness, #ConnectingTheDots, #SpinalMuscularAtrophy, and #SMA.
The 2024 campaign song “Warriors” once again provided a unique voice for the community, reinforcing the emotional connection between research and patients’ experiences, according to SMA Europe.
Some 30 SMA patient groups in 28 European countries comprise the umbrella organization. Its priorities, in addition to research, are therapy and care, healthcare systems, policy and access, capacity building, and communications and outreach.
The organization provides access to community resources, among them information on clinical trials and SMA Europe documents.
Patients, advocates, and medical professionals are encouraged to get involved, subscribe to the newsletter, and consider financially supporting SMA Europe’s work to raise awareness of SMA and bring effective treatments and optimal care to everyone with the progressive neuromuscular disease.
“United, at the European level and in collaboration with all stakeholders, we will achieve our vision of creating a better world for all those living with SMA,” Gusset states on SMA Europe’s About Us webpage. “This is our reason for being, above all else. It infuses everything we do and is what we invite others to help us achieve.”
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