• by Les Luchter , 8 hours ago

Ionis Pharmaceuticals, which is developing a treatment for the rare neurological disease of Angelman syndrome (AS), turned to Lifetime Television’s “Behind the Mystery” series to increase public awareness of the condition. AS, typically identified in infancy and often requiring lifelong care and support, is said to affect only about 15,000 people in the U.S.and 500,000 worldwide, with symptoms including developmental delays, impaired communication and debilitating seizures.

“Behind the Mystery,” hosted by Montel Williams and Olga Villaverde, is a 20-minute paid segment from branded content firm BrandStar that focuses on rare diseases. The series, which debuted in 2012, now has nearly 143 archived episodes. It airs during Lifetime’s morning show, “The Balancing Act,” another BrandStar program.

In the Ionis episode, titled “Behind the Mystery of Angelman syndrome,”  two sets of parents tell their stories of dealing with Angelman syndrome in their children. One of the parents is Amanda Moore, CEO of the Angelman Syndrome Foundation (ASF). Another is Elizabeth Jalazo, ASF’s medical director. And Ryan Fischer, COO of the Foundation for Angelman Syndrome Therapeutics (FAST) appears with Ionis’ Senior VP of neurology research Holly Cordisvich in an introductory interview with the hosts.

Ionis was involved with putting the show together. “We really wanted the episode to center on the voices of the families, clinicians and advocates,” a spokesperson tells Marketing Daily. “Rather than heavily scripting the segment, we gave each participant the space to tell their story in the most natural and authentic way possible… They were involved at every stage, reviewing every cut and sharing feedback directly with us and the production team.”

Not only are the ASF and FAST execs featured in the show, but the two advocacy groups have played a “heavy” role in promoting it, the spokesperson says.

The segment aired twice on Lifetime during the second half of November, including on Thanksgiving morning.

“Just 24 hours after the first airing, one of our advocacy partners shared that they’d heard from 10 families across the country who reached out for more information on AS after seeing the episode,” the spokesperson recalls. “We were humbled by this response, as it’s a powerful reminder of why awareness matters and the role we can play in helping families find answers.”

That said, “our primary target audience is the general public,” the spokesperson continues. “Partnering with Lifetime gave us a national platform to reach audiences we may not have reached otherwise…We feel strongly that raising broad awareness is critical, given that Angelman syndrome is often misdiagnosed as more common conditions like cerebral palsy or autism. Our hope was that this episode could help spark earlier recognition and diagnosis.”

In addition to the outreach efforts by ASF and FAST, Ionis says the episode was also promoted via its own social channels, conference handouts and email com, with both “Behind the Mystery” and “The Balancing Act” providing further support through their social platforms.

Now that the episode has run twice on Lifetime, the spokesperson says the episode will live on via its website, and that “the footage generated through this partnership” will be used “in future awareness and education efforts related to Angelman syndrome.”