NS Pharma is launching a new educational campaign for Duchenne Muscular Dystrophy (DMD) aimed at assisting families with DMD patients in navigating both the emotional and medical aspects of their journey.
The new digital campaign, called "Duchenne Heroes," operates as an educational project with a new website showcasing written and video stories.
The stories, typically featuring an uplifting tone and music, feature NS Pharma "ambassadors"—individuals paid for their role. One video, for instance, features the parents of DMD patient Emmett. It starts with their discussion about his diagnosis, goes into more details about the condition, and emphasizes the importance of maintaining a "positive outlook," echoing the themes of other stories.
Currently, the site features three family stories, each centering around a young boy as the DMD patient. However, more stories are on their way.
As part of the campaign, Duchenne Heroes will also share their stories across NS Pharma's social media platforms as well as have the families participate in advocacy events.
DMD is a genetic disorder characterized by the inability of the patient to produce the dystrophin protein, a crucial element for muscle functions. This deficiency leads to severe muscle weakening. Typically affecting boys, DMD dramatically reduces life expectancy, with the disease likely to be fatal in a patient’s thirties.
Back in the summer of 2020, NS nabbed FDA approval for Viltepso (viltolarsen), specifically in DMD patients with a mutation amenable to exon 53 skipping.
This put the drug in the same market as Sarepta’s rival therapy Vyondys 53, which got an FDA green light in 2019 for the same population.
NS Pharma, the U.S. subsidiary of Japanese pharma Nippon Shinyaku, is estimated to make around $90 million in sales of Viltepso this year, according to the pharma’s latest financial estimates.
Both drugs have shown, in trials, the ability to boost the level of dystrophin. However, some experts question how well this functions as a surrogate marker in testing and to what extent these drugs can help DMD patients in the real world.
“The biggest lesson I've learned since my son Brantley's Duchenne diagnosis is that there is no clear-cut path or single solution for a lot of life's transitions,” said Dianna Marlow, a member of the Duchenne Heroes program, in a press release.
“Our family's journey, like everyone else's, is unique when it comes to things like schooling, independence and accessibility. As Duchenne Heroes, we're proud to share our experiences if it helps to bring ideas or encouragement to other families.”