New SMA Europe documentary aims to raise awareness on research
'One Community. Shared Dreams.' urges scientists to work together
SMA Europe has released a new documentary titled “One Community. Shared Dreams.” as part of an awareness initiative aimed at highlighting the importance of interdisciplinary collaboration among researchers to advance the understanding of spinal muscular atrophy (SMA).
The documentary shares the personal stories of people around the world living with SMA, showing both their struggles and their victories, while also focusing on the need for research that addresses the ongoing needs of the SMA community.
In a press release emailed to SMA News Today, SMA Europe, an umbrella organization for patient advocacy groups across Europe, called on everyone from scientists and industry leaders to patients and the broader community to support such research efforts. The nonprofit noted working together is vital for turning the dreams of the SMA community — like finding better treatments and improving the daily lives of those with a diagnosis of SMA — into reality.
“The world of dreams is magical. It brings us new perspectives, new visions, innovative ideas, and often hope for a different future,” SMA Europe stated in a trailer to the campaign. “We want to tell the world about the dreams we, the SMA community, share together.”
SMA Europe documentary seeks to spark collaboration
Launched at the beginning of August, the campaign surrounding the documentary already has brought together different generations and key stakeholders in the SMA community, all working toward improving life for everyone living with the disease, according to the nonprofit.
“The 2024 Summer Awareness Campaign aims to unite our community under one, common hashtag: #WeAreOne while enhancing the fact that even if our community is so diverse, we keep having one, common dream: to create a better world for all people living with SMA,” SMA Europe wrote in the campaign’s website.
The ‘One Community. Shared Dreams.’ campaign seeks to raise awareness about the unmet needs of those living with SMA. (Courtesy of SMA Europe)
SMA is a genetic disease that damages nerve cells, causing muscle weakness and loss of motor function, leading to serious limitations in everyday life. While treatments exist, challenges remain that can only be addressed through research that’s relevant to patients, the campaign stresses.
“Research in SMA is vital,” the release states, noting that the documentary “provides a powerful insight into the lives of those living with SMA and the ongoing efforts to improve their quality of life through research and advocacy.”
SMA Europe is dedicated to promoting and advocating for the benefits of cross-disciplinary research in all aspects of SMA. Patient organizations from various countries are supporting these efforts in collaboration with the nonprofit.
Its ongoing campaign raises awareness of unmet needs in the SMA community and encourages collaboration between patient advocates and researchers, showing how working together is key to finding patient-centered solutions.
After the campaign ends, a spin-off will run from September to December, focusing on SMA Europe’s research agenda. This agenda is guided by the top 10 unanswered questions identified through the Priority Setting Partnership project.
For this project, SMA Europe partnered with the James Lind Alliance to identify the top 10 research priorities for SMA. This collaborative effort involved people living with SMA, caregivers, and healthcare providers, all of whom were invited to submit research questions. These questions were then categorized, prioritized, and narrowed down to the 10 most significant research topics.
These include questions on whether nerve cells can be regenerated, if biomarkers can track disease progression, and how to rebuild weakened muscles. Other questions focus on the best diet, physiotherapy, managing fatigue, and treating bone and joint symptoms. How technology can help with SMA is another major focus.
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