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Novartis is telling people living with spinal muscular atrophy (SMA), a rare neuromuscular disease, to “SMAsh” their limits in a recently-launched campaign.

SMA is a rare genetic neuromuscular disease caused by a lack of a functional SMN1 gene, which results in the irreversible loss of motor neurons, affecting muscle functioning — including breathing, swallowing and basic movement.  

It affects roughly 9,500 Americans, and those living with the disease along with their families can often feel like they’re battling by themselves, especially as children become teens and young adults. 

Novartis has stepped up for those living with SMA, thanks to a community-driven campaign and resource hub called SMAshing My Limits. 

In the past, SMA resources were largely focused on young children, but SMAshing My Limits specifically addresses the unique needs of older teen and young adult patients. 

The campaign was inspired by firsthand accounts from the SMA community, according to Tracey Dawson, U.S. therapeutic area head of neuroscience at Novartis.

The drugmaker’s market research found that the everyday milestones of SMA patients — the ways they are “smashing limits” — often go unnoticed. 

The campaign aims to reduce feelings of isolation, as well as foster a stronger sense of connection and celebrate accomplishments of young adults living with SMA. 

Dawson notes that SMA is universally screened for in newborns in all 50 states, giving those afflicted access to treatment. 

However, those treatments have only been available for roughly seven years. 

Older teens and young adults with the disease — which can vary in severity on an individual basis — are now living longer, more active lives thanks to effective treatment options. 

Dawson says Novartis has been working closely with the SMA community, including with advocacy groups Cure SMA and the Muscular Dystrophy Association, to help shape the campaign and website.

“One of the key things that came out of that was that a lot of the stuff that you and I take for granted, for them is a big deal — like the ability to retain digit movement, the ability to not have to use a wheelchair all the time or walk with aids,” says Dawson.

That insight led Novartis to craft a support system, which was recently launched at a patient conference, where it was well-received by patients and caregivers alike, Dawson notes. 

As it rolls out, patient advocacy will be a major focus for SMAshing My Limits. 

Take for example, Charlie Z., a 17-year-old in Texas living with SMA Type 3. He uses walking aids, but he also plays basketball and wants to live life like a normal high school kid. 

Dawson credits Charlie as an advocate for disability rights, access to disability sports and one of the key featured voices in the campaign.

“[The campaign] is centered around that insight of celebrating life’s achievements and being bold with them and telling people about them,” says Dawson.

The website was built by Novartis’ internal team and serves as a hub for the SMAshing My Limits campaign. Dawson calls this a digital media-focused campaign that meets patients where they are.

Since the target audience are teens and young adults, Dawson says there wasn’t a reason to promote the effort with a TV ad. 

Going forward, Novartis will be promoting the campaign through various social channels, as well as linking to resources like Cure SMA and the MDA. 

Dawson teases that industry observers should keep an eye on the campaign site in the future, as there will be a ramp-up in resources, including during August, which is SMA Awareness Month.

Treatments are also ramping up, as an IV gene therapy has been introduced, and two other therapies are now available from two different companies. 

Dawson says, since 2018, there has been a “revolution of treatment over the last few years. This is why this campaign is important, because we’re supporting kids and young adults who are now transitioning and living longer, brighter and more bold lives.”

She added that the campaign helps put a face forward for the teens and young adults highlighted in it.

For those viewing, she says the campaign also shows that these patients are living fulfilling lives that deserve every success they have — no matter how big or small.