For caregivers and families of loved ones with Lennox-Gastaut syndrome (LGS)
Ezekiel, living with LGS, and his mother
As a parent, you never want to see your child struggle.
But in LGS, is it worth risking the progress your child has made in hopes of a better quality of life?
Emphatically, YES.
Because better seizure control and more seizure-free moments are worth fighting for.
“I want to show other parents out there that there is hope, and, you know, not to give up so easily. If somebody out there is considering starting to use FINTEPLA for their child, I would highly recommend it 100%, because I’ve noticed a drastic change.”
—Jason, Ezekiel’s father and caregiver
CHALLENGE
The patient and caregiver journey for Lennox-Gastaut syndrome (LGS) is a lifelong one, requiring other diseases to first be ruled out. When children (infants) first present, there can be multiple seizure types involved.
Following a series of tests (eg, EEG, MRI, and neurological examinations), the process can continue through several failed therapeutic interventions. Even when the LGS diagnosis is finally confirmed, it doesn’t bring much relief, as the condition is difficult to treat, employing a combination of antiseizure medications, dietary therapies (ketogenic diet), and more.
Olivia, living with LGS, and her parents
Treatment preferences vary by treater, without a clear standard of care. Most patients with LGS take 3 to 5 medications to control seizures, with revisions needed to address shifts in seizure type, frequency, and diminishing efficacy. The majority of pediatric and adult LGS patients are uncontrolled (75% and 68%, respectively).
For caregivers, LGS demands constant care and support, creating challenges as they watch their children battle through intellectual disabilities, developmental delays, behavioral issues, and problems with mobility. The goal of improving quality of life is elusive, taking an emotional, physical, and financial toll on patients and families.
“We tried so many LGS treatments for Devon. I thought Devon’s seizure control was as good as it was going to get. So when I read from another caregiver that FINTEPLA has a unique mechanism of action, and that it can be added without disrupting the progress we have from his current treatment regimen, I asked his doctor if we can start Devon on FINTEPLA. And I’m glad I did, because now we have better seizure control with FINTEPLA.”
—Tracy, mother of Devon
Devon, living with LGS, and his mother
INSIGHT
More than 90% of children with LGS are resistant to antiseizure medications. Reducing intellectual disability/behavioral symptoms was a top 5 factor when prescribing treatments. And decreasing side effects—especially the risk of exacerbating seizure frequency—was a significant need.
Given the challenges of LGS management, parents and caregivers struggle between settling for suboptimal control and “rocking the boat,” potentially giving up progress and making things worse. Ultimately, parents and caregivers do not settle when it comes to their child, and the possibility of better seizure control/quality of life drives them to want to make a change.
SOLUTION
FINTEPLA offers rapid and long-lasting seizure reduction across various seizure types commonly experienced in LGS.
Asaiah, living with LGS, and his mother
OBJECTIVES
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Convince parents and caregivers that despite the arduous journey, no one should settle for less-than-ideal seizure control
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Help parents and caregivers recognize that the improvement they never thought possible is closer than they think
“When it comes to Asaiah’s seizures, I realized I don’t have to settle for ‘good enough.’ I would say to another caregiver that’s going to try FINTEPLA that they should go for it. Better seizure control is worth fighting for, and it’s closer than you think.”
—April, Asaiah’s mother and caregiver
CREATIVE APPROACH
The Worth Fighting For campaign helps reinforce what caregivers already know in their hearts: That OK is not enough, and that their child deserves to live their best life. By doing so, we can compel them to act on their instincts and advocate for better.
“We want to prompt caregivers, who might be hesitant or afraid to make any changes to their treatment regimen, to reconsider if their current level of ‘seizure control’ is acceptable. We want to help them realize they don’t need to settle for just ‘good enough’ and that more is possible.”
—Ross Lu, FINTEPLA Marketing Lead
RESULTS
In market research, “Worth Fighting For” was the clear winner, with respondents strongly gravitating to the caregiver quotes as well as the emotional tagline, “[patient name] is worth fighting for”—a reminder of why pushing for better control matters.
222%
increase in FINTEPLA awareness among caregivers of patients with LGS
116%
increase in FINTEPLA new patient starts
