While the spinal muscular atrophy treatment (SMA) market heats up with competitors and researchers continue to work on new drugs, its support community keeps rolling along—literally.
Leading organization Cure SMA has been bringing families together and raising awareness through its Walk-n-Roll events for 20 years. The COVID-19 pandemic forced changes, but Cure SMA got creative.
The group condensed the more than 40 local events around the U.S. into four national virtual walks, one for each season of the year.
And for the first time, a Walk-n-Roll live celebration ceremony was broadcast on YouTube and Facebook Live. Hosted by Cure SMA, the virtual event featured families, therapists and patients talking about things like teletherapy during the pandemic. While two young patients agreed it was okay, they're also excited to get back to in-person therapies—as they said, "We miss the pool!"
RELATED: Novartis touts latest Zolgensma data as SMA competition against Biogen, Roche heats up
The event included video messages from national Walk-n-Roll pharma sponsors Biogen and Genentech. Biogen's message pledged to "keep going forward" until a cure is found, while Genentech celebrated the communities' strides mentioning its own "SMA My Way" support.
Throughout the virtual spring walk season, participants created Facebook groups and social media posts to show off photos from their personal walks and participate in challenges and fun activities.
The goal? To create fun events families could watch together and to keep going, Erin Oganesian, vice president of development at Cure SMA, said.
“We encouraged people to go out into their communities or their neighborhoods, and then walk where they felt most comfortable and most safe,” she said.
In June, Cure SMA added a walking app with routes and preplanned audio. In-person walks will resume this fall, with 25 events planned from August through the end of November.
Cure SMA is also celebrating healthcare wins. Eighty-five percent of babies born in the U.S. are now screened for SMA, just three years after SMA was added to the federally recommended list of screening tests at birth.
Early detection and early intervention is key to quality of life for babies with SMA. Research shows treatment is most effective if started while the child is asymptomatic.
FDA-approved SMA treatments include the world's most expensive drug: Novartis' $2.1 million gene therapy Zolgensma for children who are less than two years. Roche Genentech's Evrysdi treats children from two months and older, while Biogen's Spinraza, developed with Ionis, is approved to treat all age groups.